We need to talk about this
We need to talk about this Copyright © 2017-2018 Angelina Souren All rights reserved. Essay, non-fiction. Publisher: SmarterScience, Portsmouth, U.K. Simultaneously published as e-book. Amazon paperback edition, 5” x 8”, glossy cover. Printed on white paper in Garamond, Bookman Old Style and Brittanic Bold. ISBN: 9781521296790 ASIN: 1521296790 Version date: 22 September 2018 Keywords: bioethics, eugenics, assisted human reproduction, discrimination, equality, euthanasia, abortion, disabilities, technology, medicine, health
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We need to talk about this by ANGELINA SOUREN
Amazon print edition
Table of contents
2. Selection of gametes, embryos and fetuses
3. Accepting ourselves
4. Alternative considerations
5. Technological mistakes
6. Lives not worth living
7. Guidelines for eugenics
9. Past and present lessons
11. More information
Articles in newspapers etc.
Books and book chapters
Scholarly articles and reports
About the author
WE NEED TO TALK ABOUT THIS
0. Foreword You are looking at the thoroughly revised edition of a book that I first published in a big hurry because I consider its main topic (the new eugenics) highly important and its discussion very urgent. It concerns what our future will look like, among other things. Are you new to the area of personal eugenics? Then I invite you to walk with me, and explore some of the questions that play at the intersection of life, death and technology. Yes, I am merely stumbling around too. Nobody has all the answers. That said, many people have deep feelings about topics in this area and particularly the mention of the phrase “designer babies” usually evokes strong responses. Some people say that it’s ridiculous to talk about designer babies, and that we’ll never have them. We’ve already been making designer babies for decades, however. We do it when we abort babies with Down syndrome, we do it when we abort female fetuses and we do it when we seek a sperm donor with a Ph.D. and brown eyes. A designer baby is a baby who is more desired than another one. It is a baby preferably allowed to begin his or her life relative to another baby. And aborting people with Down syndrome is eugenics. I will not provide a thorough introduction to all reproductive technologies that we currently have available. I want to make you think about what it means to be alive and how we deal with
various issues of life and death. I’ll point out directions. I also make you wonder whether we even have the right to do some of the things that we humans do, and what duties we have as a result. Duties and rights go hand in hand. Rights require others to have the duty to respect those rights. When rights are violated, people ask the police or the courts, and sometimes politicians or clergy, to step in. I didn’t write this book to convince you that my views are the right ones, even though I hope you will agree with many of them. I wrote this book to encourage as many people as possible to develop their own position in this area, to go beyond impassioned exclamations like “this is so wrong” or “this is very good” and to make their opinions known to their governments, academics, and their friends, relatives and colleagues. Why? First of all, these issues are too important to leave up to the handful of experts who advise our governments. It leaves governments no choice but to follow these experts’ advice, and some of them hold strongly biased views. They don’t have all the answers either! Yes, governments may seek our input through surveys and public consultations prior to major decisions, but do these governments also provide us with all the necessary and unbiased information beforehand? Besides, most of these public consultations remain unnoticed by most people. There are no cars driving around from which people with megaphones shout that we should partake in this or that public consultation. There may be a few tweets and some emails. But that’s it. Second, we need to grow toward a global consensus on how to
deal with these issues. If we don’t start tackling these topics globally, citizens will simply increasingly often travel to nations with laws or practices that cater to their personal wishes, rendering our own legislation and guidelines powerless. It causes tension. We don’t need more tension in the world. We need to cooperate much more. We need a global consensus on many more issues than the practice of personal eugenics anyway. Why restrict the regulation of eugenics to artificially imposed borders? I dedicate this booklet to Michael Sandel and Glenn Cohen, who are both professors at Harvard Law School. Their work inspired me most and drove me to start writing this booklet. I owe many more people and I thank them too for having fueled me, including the people I mention in this book (and even a few people who wanted to start a tissue biobank). I also wave thankfully at the neighbor at Hale Court who always smiles, rain or shine, and keep my fingers crossed that the U.K. government will soon contain more people who are as wise and considerate as he is. In addition, I gratefully acknowledge my maternal grandmother, Anna Gielen, who remained highly politically engaged throughout her advanced years until she passed away. I have recently come to realize that I take after her in more ways besides my love for horses. I emphasize that any errors in this booklet are entirely mine. If you spot a mistake, feel free to let me know ([email protected]
). Maybe I expressed something clumsily or maybe I genuinely messed up here and there in a way that is annoying for readers. I would like to be able to remedy such hiccups, so I welcome your feedback.
Be aware, though, that I consider this book an essay, an attempt to address a vast number of issues under one umbrella. It contains shortcuts, inaccuracies and undoubtedly several actual errors. I fully understand how upsetting this can be to professionals in the various scientific fields. However, it was not my ambition to write a scientifically watertight work (the way scientists write for their peers), but to publish something that can help create and increase awareness among the members of the public. These members of the public also include scientists in different fields, many of whom have never heard of techniques like CRISPR. To them, I need to point out that bioethics writings differ considerably from academic science writing. I too had to get used to that. I also wanted to provide an impression of how intricate the web of feedback loops is in which we live, how everything connects to everything, not just in nature, but also in society. Bioethics is much more complicated than allowing (approving of) or forbidding (condemning) x, y and z. There are so many angles to consider! Rest assured that I will continue to fine-tune the text and add corrections, which the era of electronics fortunately enables me to do. That said, I am also highly aware of the fact that science will always also remain a matter of opinions expressed by individual scientists after which they may or may not continue to produce research that will eventually lead to a consensus. (Translation: I too am entitled to my own opinions.) Certainly initially, this was a very difficult book to write for me and I had to push myself through boundaries repeatedly. I have no personal connection to any form of eugenics, such as forced
sterilization, but reading up on what currently goes on and what was done in the past in the name of “bettering” the human race is a chilling experience. It hammered home some other harsh realities as well (with regard to certain unpleasant aspects of Britain’s governing style and the impact on its culture and population). A lot of the reading material is depressing and far from attractive. Several times, I felt like giving up and focusing on something more positive instead, something more fun, but I also felt a strong drive to push onward. Once I got over the worst hurdles, writing this essay became more enjoyable because it brought my aim into focus. I published the first version in the first half of 2017, acutely aware that it contained many gaps and shortcomings. I rearranged the contents and added a lot more material toward the end of 2017 to create the version that I released in early February 2018. During the writing of this book, I was confronted with the shallowness of my own views repeatedly. I had always blindly seen abortion as permissible, for instance, as I am a feminist and feel that women should have as many opportunities as men, and not be held back by their biology. I was forced to reconsider and I also ran into the strange peculiarity that none of us seem to know whether fetuses should have the same rights as their mothers. Pro-lifers often consider the lives of fetuses more important than the lives of adults, and prochoicers hold the reverse view. In between lie considerations such as “but what if the mother was raped?” and “but what if continuing the pregnancy means that the mother will die?”. To my surprise, I found myself sharing some of the opinions of
pro-lifers. I could suddenly see their point of view as well. In my view, we currently have the need for a new legal personality for fetuses that are not viable outside the human body yet. I don’t think we can proceed unless we give them some rights and define those rights formally. Because we (the courts) may increasingly end up in endlessly complicated tangles if we don’t. In this foreword, I have to address a few more household issues, besides typos and errors. •
I intended the quotations included at the start of each chapter as food for thought, not to spark discussions about who said what because that’s irrelevant within the context of this essay. I therefore did not research the background of the quotations and took them as a given.
Much of the information I gathered on Bentham’s and Mill’s utilitarianism came from five books of which I have only included one in Chapter 11. It is easy enough to find other books and online materials on the topic if you want to read more about utilitarianism. It was not my intention to explain in detail what utilitarianism is, but to make you aware that utilitarian thinking can lead to excesses of callousness and to the application of cold-hearted calculations to matters that affect life and death. (I believe that Britain including particularly its governments should be more aware of the influence utilitarianism has had on the country’s governing style and society, even still has today.) Such shortsighted calculations can also serve as a decision-making tool in eugenics, and I consider that potentially dangerous. I feel a fist clamp around my heart when I think of utilitarianism.
Throughout this booklet, I use “we” a lot because we all have a (moral) duty to care about this topic and weigh in. There is no “us” and “them”, certainly not in these matters. This is about our lives, deaths and future. We are all in this together. We are all responsible for humanity’s failures, mistakes, advances and successes. What we do as individuals affects us all collectively. It takes many individual bricks to build a house.
The tone of my writing varies strongly throughout this book and some people will want to skip certain passages or even whole chapters. That’s fine. My book’s target group contains adults who are not in the field of bioethics as well as some who are. They have all sorts of educational backgrounds and interests, but they have in common that they hold matters of life and death dear. That means that anyone who picks up this book likely will really want to read it and should be finding enough bits and pieces that appeal to him or her. I hope that this will entice the reader to work through the other material as well, even if some of it may appear terribly esoteric at first or not relating to one’s own country. This is also why I have added such a rich variety of resources at the end. I’ll already be very happy if someone accesses this book, and does nothing else with it other than to consume all the TED Talks I’ve added or all the newspaper articles. I have also added links to free online courses.
I must include a word of warning as well. Chapter 1 is deliberately provocative. I use it as bait. I want to make you sit up, and I can’t accomplish that with a lot of
scholarly language and bookish reserve. I am sure that both my opinions and my approach will incense some people. I apologize in advance for upsetting you, if you are one of them, but eugenics is an often upsetting topic. Sugarcoating it all does not do the discussion any good. In fact, the reasoning I apply in Chapter 1 is starkly utilitarian. You also have to know that I wrote this booklet from the perspective of an educated white middle-aged Dutchwoman, a feminist who used to live in the States and is currently based in Britain. I have no children, never had a child wish, and never had an abortion either, but I did mother my two younger siblings and my dad for a while, and I have had furred and feathered kids (fids) who were all rescues. I have never had any illnesses, conditions or injuries more serious than a concussion in 1977, pigment dispersion syndrome in both eyes diagnosed in 2008, walking into the icy December sea in 2010 out of sheer despair after having run out of options (dealing with Britain’s excessive inequality, xenophobia, misogyny and gerontophobia can be a heavy burden, but I’d also lost over 90% of my income), two frozen shoulders in 2012, a bunch of allergies, and one-sided viral pneumonia in 2017 (partly related to one of those allergies). I have also witnessed a lot of physical pain, starting with my mother’s. She contracted cancer at a young age. After many years of suffering, she passed away at age 42, preceded and followed by two of her siblings, both of whom also succumbed to cancer in mid-life. I have no religious beliefs, other than vague Zen tendencies, although I was raised in a Roman Catholic environment. My main background is in science and technology, but I have
worked in other areas as well, including the legal realm. I do not hail from a privileged background and went to university at a relatively late age. My parents had little more than a primaryschool education, but I made up my own mind and started going my own way from a very young age. My mother encouraged me and probably actually sent me off on the road to science, even though she said that she wanted me to become an air hostess and see a bit of the world. I did apply for a position as air hostess three times (KLM, Lufthansa and one of the Dutch holiday charter companies), but the airlines didn’t want me. So instead, I became an earth and marine scientist and saw a bit of the world. My mother bought me my first mineralogy book when I was 11 or 12 and when I was much younger, she had already subscribed me to the science and technology magazine “Kijk” (Dutch for “Look” or “Watch”) for youngsters. I love scientific and technological progress. I have always tended to cheer it on and yell “Go for it!”, but when I look at what we – humanity – have done so far with the scientific and technological advances we have made, however, I have to yank myself back. That’s one of the reasons why I started this undertaking. And it really does appear to be high time for a book like this. When I was wrapping up this edition, I noticed a storm of protest on Twitter regarding what a character called Toby Young apparently had said on BBC Radio 4 about “progressive eugenics”. Now we can add yet another qualifier to “eugenics” besides the many we were already using, such as “liberal” and
“private”. And in March 2017, when I was still in the middle of writing the first edition, British expert Wendy Savage (a gynecologist and professor at Cambridge University in Britain) allegedly stated in an interview with the Daily Mail that a woman should always be told the sex of the fetus she is carrying and should be allowed to abort the fetus if she does not like the baby’s sex. Apart from the question whether or not various British newspapers represented Savage’s views accurately, whether or not a woman has the right to ask not to be told the baby’s sex and the fact that sex is a “dial” rather than a binary switch, the occurrence highlighted that it is necessary to have these discussions. A practice as allegedly proposed by Savage (making sex selection permissible) would clear the road for deselecting a fetus for just about any discriminatory reason. Supposedly, Savage said that the instances in which a woman would choose to abort on account of the baby’s sex would be exceedingly rare. That may be the case in Britain now, but what is the case today may change almost overnight. (I also address the topic of “fashion” in my essay, with a grateful nod to Hank Greely, who’s a law professor at Stanford.) There are several countries in the world in which male children are currently preferably allowed to come to life at the expense of female children and it’s already changing these countries’ populations. Besides having changed the gender compositions of some populations, we have also already changed the populations of countries like Iceland, Denmark and the U.S., much more radically, by eradicating children with Down syndrome. At the same time, we are seeing a surprising trend of emancipation for
people with Down. Allow someone to flourish boundlessly and you may be astonished by what he or she turns out to be capable of. ("Treat people as if they were what they should be, and you help them become what they are capable of becoming," Goethe is supposed to have said or, more likely, written a long time ago.) Hold someone back and you condemn the person to a life of limitations. We’ve also seen this happen for women. I think we need to view and accept non-mainstream persons – people who are mentally and/or physically different – as a natural part of human diversity. If nature allows them to live into adulthood, then that is what they are. Part of human diversity. I think we should, can be and are becoming much more accepting of the full range of human life. Globally, we are going through several processes of transition toward less limiting viewpoints than we currently have. Not even women’s emancipation has already run its course to completion yet. Surprisingly, immense progress was made in the months between the first version of this foreword and this version. Sexual harassment and rape as something to shrug about suddenly became no longer acceptable and not in a gender-limited way either. There have also been some interesting steps toward closing the gender pay gap. So, yes, I think that we’ll get there. That is also partly why with regard to various genetic selection practices, I think it is best to proceed with a great deal of caution so that we limit the chance that we end up with regrets. Collectively, we have a tendency to race ahead blindly, though,
even when we don’t know whether we are on a straight and level road or on a winding mountain road with many sharp bends ahead of us. This certainly may be true in the field of reproductive technology because it is currently progressing so rapidly that only a few of us are able to keep up. (That does not include me.) The new eugenics bears a resemblance to the use of pesticides and insecticides, which has had profound effects on and for our own species and our habitat, planet Earth. Looking back, it is stunning that we never foresaw that the use of insecticides was likely to affect birds, amphibians and wanted insects, such as bees, as well. What we could not have predicted, however, is that the use of pesticides and insecticides now also appears to be resulting in a decline in male fertility. (Human fertility, that is.) Recent research suggests that there may even be links between pesticides and ALS, depression and suicidal thoughts in humans. We need to ask more questions and look at the new eugenics from many more angles. I think that the boundless application of the new eugenics could end up dissolving the glue that keeps society together. If we proceed with wisdom, however, that does not need to become the case. With regard to the legal profession, I say the following. We normally don’t legislate or regulate for the current situation, if we are happy enough with it. But we should regulate, legislate or draw up guidelines to help us deal with or prevent situations that we don’t yet have and that we wouldn’t want, certainly when it concerns relatively new practices that are still gearing up. What do I mean by that? If you have a village in which
nobody ever gets murdered, it does not mean that the people in the village would welcome murder. In the event of such a murder, it helps to have legislation in place that unequivocally states that murder is not allowed so that you can act instantly. In practice, legislation almost always lags behind on reality. This means that we as society need to be clear on what we want and don’t want when the laws don’t exist yet that follow up on our preferences.
“Life is a sexually transmitted incurable condition, fragile and tenacious at the same time.” – Deepak Chopra
Let’s carry out a thought experiment. Imagine a western country that is the most openly misogynistic country in the world (misogyny means hostility toward women), more so than Afghanistan and certain countries in Africa. If you’re a fetus in that western country, you currently have a 30% chance of being born into poverty and the level of poverty in that country is often pretty bad. No chickenshit. Every winter, tens of thousands people die in that country because they can’t afford to heat their homes properly. If you’re one of those 30% of its poor children, your health is likely to suffer as a result, your lifespan will probably be shorter, the quality of the education you receive is bound to be lower and the education you receive tends to be of a lower level as well. You are also more likely to become homeless as the financial support for young people in this country is highly limited. Let’s assume that this western country is part of the EU. The country’s inequality is so immense that on its own, it drags down socioeconomic (in)equality for the entire EU. (So it pulls down the combined values for the other 27 countries. Again,
no chickenshit.) There is also a high level of xenophobia and intolerance, not just with regard to persons from other countries (called “insularity”) but also within the country itself, among its own citizens. Research has shown that this country’s citizens are also the loneliest people of the EU, and possibly of the whole world. The level of education in this country isn’t necessarily very high, although it has a few elitist universities that consider themselves important and constantly beat themselves on the chest for it, while more and more of its students prefer to do their degrees in the U.S.. Many Chinese high-school students do better than that country’s best high-school students and they also have a better command of that western country’s language. The people are far from stupid, however; in fact, most are pretty clever. They wouldn’t survive otherwise. There is a high level of alcohol abuse (a major drain on the country’s health system), a significant level of crime and a high level of various forms of injustice (including several instances of mass child sex abuse of a nature that other countries don’t appear to have). The level of knowledge and training has been gradually sliding over the past 100 years or so, so that this country now requires foreigners to help keep its power plants and hospitals in operation. As a country, it doesn’t cooperate particularly well with other countries. The nation’s leaders are often loud and obnoxious, which makes them come across as immature and rude to the leaders of many other nations. Its national manner of thinking is generally described as “muddled”, notably by people from that country with extensive experience abroad,
such as major diplomats. (These diplomats sometimes even quit when they become too frustrated and are no longer willing to deal with this stupid shit.) The country also likes to wage wars. It has managed to have one of the longest armed conflicts in the history of humanity, fought a war against Argentina in which a little over 900 people were killed just a few decades ago and has recently announced that it won’t hesitate to begin a war against Spain either. Now, if NATO and the UN got together, were to decide to bomb this country to smithereens and turn it into a nature reserve, everyone would clearly benefit. Nobody would suffer. (Except maybe that country’s representatives in NATO and the UN, but that’s all. If they were sent home in advance, they'd never even realize so that would be the humane thing to do.) In fact, its inhabitants would cease to suffer – they would be put out of their misery – and prevention of harm is a good thing, of course. Everyone else would clearly benefit as well because they would no longer have to endure the negative effects of this country’s bad habits and attitudes. Spain could sleep easier. On top of that, everyone would gain a wonderful nature reserve. No problem, right? (I hope you are fuming now.) If this thought experiment about eliminating a country based on the argument that its destruction would increase the good in the world and decrease harm make you feel uneasy, upset or angry, then consider that elimination is a practice that is carried out with regard to individual humans – groups of humans – all the time. The composition of the world’s population is
changing as a result. Persons who are non-mainstream are often considered less desirable or miserable – this includes people who are not financially wealthy or who speak a different dialect – are still often banned from life as a matter of course. How do you think the people feel whose kind is being eradicated? How do you think they feel about being considered undesirable – not cool or sexy enough, not mainstream enough – and because their elimination is supposedly beneficial for everyone? I am referring to the new eugenics, the practice of creating designer babies at the expense of “less desirable” babies. It is sneaking up on us at an increasingly faster pace.
“All the elements for your happiness are already here. There's no need to run, strive, search or struggle. Just be.” – Thich Nhat Hanh
2. Selection of gametes, embryos and fetuses The new eugenics – selection of embryos and fetuses on the basis of properties, and the addition or elimination of genes or gene combinations in embryos and fetuses – more or less began with chorionic villus sampling (CVS) and amniocentesis. Then we started buying and selecting donor eggs and donor sperm, ticking off boxes with properties that we were looking for (though how much freedom you have in these matters still depends on in which country you shop for these services). Since 1989, we’ve been carrying out pre-implantation genetic diagnosis (PGD), also known as pre-implantation genetic screening (PGS), on the pre-embryos created during in vitrofertilization (IVF). IVF is a rapidly growing market. Table 1 shows you life stages, interventions that can take place in those stages and some of the techniques that are used. I have left out “neutral” interventions such as life support, incidents such as illnesses and accidents, and factors such as education and training. Including illegal abortion in this table meant that I also had to include murder and other forms of illegal life ending at older ages in this table. The term “therapy” can also include life-long incarceration or hospitalization of for example extreme psychopaths for whom there appears to be no
effective treatment or other solution at the moment. Each of these stages can include or be followed by litigation, particularly in highly litigious societies such at the United States. Think of general professional negligence or medical malpractice or, more specifically, wrongful birth, wrongful life and even perhaps libel or slander. This can also be a reason for wanting good guidelines or legislation for the practice of eugenics because it can keep costs down for parties in lawsuits as well as for the taxpayer when disputes do not need to be brought before the courts but can be avoided. You probably associate the term eugenics with the atrocities committed under Germany’s Nazi regime particularly during World War II. Old-style eugenics began in Britain, however, not Germany. It was then adopted by the United States, from where it provided the inspiration for Nazi Germany’s practices. It was also conducted by the Scandinavian countries and it still goes on today (see Chapter 9). In addition, we have new-style eugenics, with as often used distinction that old-style eugenics was state-mandated whereas in new-style eugenics, parents are supposedly free to choose, and not exposed to undue influence. (In practice, this distinction does not seem to hold up. Some governments define for us which children we should prefer in some cases of IVF, for instance.) Technological advances have made it all possible and these advances are now moving much faster than most of us realize. We will soon be able to order our children according to our own detailed specifications. We will be able to pick their properties from a catalogue. And again, to some degree, this is already the case.
The practice goes accompanied by several different names. Personal eugenics, private eugenics, liberal eugenics, consumer eugenics… You can also hear the terms PGD, PGS, genetic screening, egg (donor) selection, procreative beneficence, sperm (donor) selection, pre-embryo (de)selection, pre-embryo (de)selection, positive or negative selection, IVF, (ex ante) human enhancement, (ex ante) bioenhancement, (ex ante) cognitive enhancement and (ex ante) moral enhancement and a few others within this context. There is also, of course, the phrase “designer babies”, which some people define in an exaggerated way with the apparent intention to ridicule those who dare ask questions and who dare have doubts about some instances of scientific and technological progress. On the other side of the spectrum are perhaps people with a deep distrust of science and technology. IVF once started out as a way or helping couples who couldn’t get pregnant, but now is increasingly used to postpone pregnancy to allow women to have careers. While IVF still has a low success rate, it is a flourishing commercial practice. In their 2015 publication “Infertility around the globe: new thinking on gender, reproductive technologies and global movements in the 21st century”, Inhorn and Patrizio reported that while only 45 of the 191 World Health Organization’s member states had IVF services in the year 2000, the number had risen to 59 five years later and to 105 another five years later. More than half of these clinics are located in Japan and India and nine Middle Eastern countries were among the 48 countries carrying out the highest number of cycles per million inhabitants. So if you thought, as I initially did, that the use of such assisted reproductive technologies (ART) is greatest in the United States,
you were wrong. Europe leads the list at 56% of conducted aspirations (egg harvesting), but this is not exclusively concentrated in its richest countries. It is followed by Asia at 23%, with North America including Canada in third place at 15% (see the 2015 publication by Präg and Mills). The only geographical areas that have no or very limited IVF or other ART services are sub-Saharan Africa and most of Central Asia. These are also areas with high secondary infertility – after the first child – partly due to botched (illegal) abortions. There is some speculation that the use of ART is sometimes promoted to boost low fertility numbers to ensure that a country’s population continues to grow, even though IVF does not actually have much effect on a country’s fertility at the moment. (An important question is whether stimulating a country’s population to grow through procreation is ethical.) In Britain, about 100 women per day currently ask for IVF (36,500 women) and roughly 50,000 women per year undergo IVF treatment. Britons also go abroad for IVF. However, whereas IVF is publicly financed in Britain, IVF is still expensive in the United States (around $10,000 per cycle, excluding the medications, which will set you back $2,000 to $4,000) and only possible through private insurance. Outside the U.S., IVF and similar forms of ART are much less expensive. A Belgian-led non-profit organization recently invented an IVF method that costs only €200 per cycle. But while IVF is currently still relatively unsuccessful, this is bound to change with technological progress and the boost in experience gained worldwide. (Particularly China is pushing the use of PGD to deselect certain embryos very hard.) Then the effects of selecting the properties of offspring could start to kick in, while the application of IVF will continue to grow. In addition,
there are techniques like CRISPR (editing of genes and genomes). So far, CRISPR still seems to be mainly looked at in a way that does not “edit out” people, but that protects them against developing serious physical conditions as adults and as far as we know no babies have been allowed to develop yet from cells treated with CRISPR. But how much longer will this remain the case? We can see these practices of pre-embryo, sperm and egg selection on the basis of (genetic) characteristics as a form of human enhancement. That complicates the issue, because human enhancement is something we all do. When you drink a mug of coffee before you go for a run or when you’re working late, you do this because the coffee enhances your capabilities at that point. Coffee is also a bronchodilator, so if you have mild asthma, it will give you a double boost prior to your run. Coffee, in fact, is something of a miracle drug because it also does a great job protecting our livers and helps with memory when we get older. We can see receiving education, getting medical assistance or taking a painkiller or hay fever medication as enhancements too. (I have some doubts about education, as learning is something all animals do and appears to be a natural part of life. Learning leads to the development of enhancements. We once learned which herbs to use as help against certain diseases, just like we learned which plants to avoid because they made us ill.) But there are more and more forms of human enhancement that make many of us frown and just as many people shrug. Is it better to train like crazy for a sports career than to take performanceenhancing drugs? And what if you need to work many hours in your local supermarket to be able to afford the performanceenhancing drugs? Is it okay to take Ritalin when you’re cramming for an exam? Why, or why not? Those are questions that Glenn
Cohen (Harvard) asks in one of his courses. That is not what this book is about, but it is strongly related to the topic of eugenics. What makes eugenics different is that it (potentially) changes the makeup of populations as it is not about improving oneself but changing one’s offspring and one’s offspring’s offspring and their offspring.
The element of risk plays a role in these personal enhancement considerations. Is it safe to take certain drugs that are normally prescribed for a medical condition that you don’t have? Is taking that risk a personal choice – up to you – or should states regulate it? Should employers be able to force you to take performanceenhancing drugs? Should it be mandatory if for example the use of such drugs lowers the risk of human error in jobs that can affect many others, such as running a nuclear power plant or flying an airline jet?
What about gene therapy? What about mitochondrial replacement therapy (MRT)? It is now allowed in several countries after we put it on ice for a few decades so that we could monitor what happened with the children who were first created through MRT while we expanded our knowledge. MRT allows children to come to live who likely wouldn’t even be born without this intervention. MRT is primarily about enabling life, does not necessarily prefer one form of human life over another. Should we focus on that, on enabling lives that would not be possible without intervention and lives that would be considered not worth living without intervention? Should we dedicate ourselves to finding treatment options for adults? Or should we strive for creating what some call the “best” children? But who gets to decide what “best” means? Are my siblings better than I because I need glasses or contact lenses to see in the distance and they don’t? Am I better than my siblings because I have brown eyes, whereas they don’t? At some point in the near future, we will have to decide on many of these issues. We have to think about whether parents can force gene therapy on their children, whether anyone is free to purchase gene therapy for himself of herself if he or she can afford it, as well as whether insurance companies or states should cover the costs and make it available to everyone. Should all forms of gene therapy be allowed or only the ones that cure serious conditions? Should the latter only apply if parents want to carry out therapy on their children, or should it hold for everyone? If we also allow other kinds of gene therapy, should we put limits on them, somehow? Would we be allowed to raise our IQ to 200 but not to 300, or our child’s height to 1 m 80, but not to 2 m 80 if that became possible?
But notice that I am now starting to talk about future after-birth options. So let’s go back to what this booklet is mainly about, the selection of properties in our children before they are created or right after they have been created. Are we truly enhancing humanity when we do that? I think that we are rapidly heading toward a future that we can’t imagine yet, and that gap in our imaginative powers is why we need to talk about this now and look at this from all possible angles. We cannot leave it all up to the handful of experts who (we hope) are able to keep up with the developments. They would have no choice but to act on the basis of their own views, preferences, experiences and limitations. Governments do not know more than we do in this area. If we don’t step up, start reading, watching videos, educate ourselves, develop our own views and make our own opinions heard, we may later find ourselves faced with circumstances we can no longer change. That is, our children and grandchildren may. I know that this will sound like fear mongering or technophobia to many. Some may even call it paranoia. Is it? True, the human race has made a lot of progress as a result of developments in science and technology, but we have also made a large number of mistakes that in retrospect are unbelievable. How come we never saw the obvious potential negative consequences of so many things we did in the past, in the name of progress? It’s as if we never stopped to think them through. As I mentioned in the foreword, I have a science and technology background and I have always tend to see new developments as
cool and exciting. But I’ve been hitting my head a lot in recent years, figuratively speaking, and I have developed a level of despair about the collective stupidity of the human race that surprises me. How could I have been so blind for so many years? How could so many of us have been so blind for so many years? Looking back, we can see that we have made many mistakes in the past because we forgot to ask the most obvious questions, failed to foresee the most obvious possible negative consequences (see Chapter 9). So I think that we need to talk about private eugenics now. (It relates to how we think about many other challenges in the area of bioethics. Table 1 and Figure 1 provide indications.) Because I don’t know if we will be able to turn back if we go full steam ahead get this wrong. Do you? The unbridled creation of designer babies – the new eugenics – would affect the dignity of humans. It threatens to undermine the basis that enables societies to function and thrive. It could very well dissolve the glue that binds us. I know that sounds dramatic. But that comes on top of the fact that we don’t know the biological and technological consequences yet either.
“There is only one success: to be able to live your life in your own way.” – Christopher Morley
3. Accepting ourselves
When parents who can afford it one way or another select for or against certain properties in their offspring, they mainly appear to do that for reasons such as the following: •
Attribution of great importance to the child’s later acquisition of wealth;
Attribution of great importance to factors expected to impact the child’s later capability to compete in schools and for jobs (such as IQ, height, hair color and eye color);
Judgment that one thing is better than another (such as deaf culture versus non-deaf culture, or hearing versus deaf);
Avoidance of practical consequences related to having a physically or mentally different child;
Prevention of pain and suffering in a physically or mentally different child;
Acceptance of the parents by their peers, friends and family;
Acceptance of the child by its peers and by society;
Wishing to ensure that their offspring resembles them in many ways;
Avoidance of psychological stress for the parents in the case of physically or mentally different children;
Avoidance of extra costs for the parents related to having a physically or mentally different child;
Attribution of great importance to the child’s physical appearance or attributes (height, skin tone, hair color, eye color, bone structure, genitals);
Attribution of great importance to the child’s ability in a specific area that the parents hold in high regard (such as music, sports, or academia).
I believe that it is significant that only a minority of parents are interested in deliberately producing for example a deaf child or a child with dwarfism (achondroplasia) and that some people call this “diminishment”. We should see it as enhancement because that is what it is in the eyes of the parents and also because there is no such thing as diminished humanity. Almost all of us are still 100% human at this point. Someone with, for example, a pacemaker or cochlear implant is still considered fully human. The reasoning applied by the parents appears to be the same. All these parents simply want to have something that they value more than something else. There appear to be two main components behind the parent’s motivation. The first component is that the parents see the children as products, and select them the way some people
select a dog. It has to be a certain breed (which may depend on which breed is in fashion, which is often related to a form of entertainment such as a game or TV series) or have a certain color and thickness of coat and be of a certain size. Brachycephalic dogs look oh so cute, but that cuteness comes at the expense of the dogs’ health and wellbeing. It may also be desirable to have a dog who does not shed hairs continually and whose bark isn’t too loud. Such parents may not be able to stand the thought of having a child they’d consider less than ideal. The second component is that parents wish to ensure that the children will be financially well off as grownups and want to make them competitive. (A third motivation will soon be the parents’ fear of being sued by their children later, in highly litigious societies. This is another reason why we need to start regulating eugenics sooner rather than later.) The fact that some people see a child the same way they look at a new car or pet raises the question whether parents should have a parenting license, just like drivers need a driving license. With regard to the second component, I find it tragic when parents view their children’s amount of money in the bank as the only way of assessing their true worth, but this is a reality for many people. I could call such people deplorables, and I am sure that many of them voted for Donald Trump. But who am I to tell them which values to choose? Of course, there is nothing inherently wrong with making money and wanting our children provided for. Money is not a limited resource like phosphate, rare earth ore or natural gas. But money is not the only measure of worthiness, and it’s restrictive as it does not include joy, happiness or personal fulfillment.
The overriding message, however, seems to be that most of us consider the life of a mentally or physically different person less valuable. Where did we get that idea from? Why do we have so much trouble accepting each other and ourselves? Why do we want to select certain characteristics and reject others? We have to be careful with that, because the fact that societies pay certain people more money than others does not necessarily mean that the latter people’s lives really do have less value. The existence of the gender pay gap probably illustrates this. The fact that we pay women roughly 20% less than we pay men for the same work doesn’t mean that women are less worthy of life than men. So on the one hand, we have a tendency to judge a human’s worthiness – right to life – on the basis of the size of person’s earnings and on the other hand, we don’t because nobody is suggesting that we stop producing women. However, deselection of female babies does take place. A United Nations report published in 2015 states that the “standard biological sex ratio at birth is around 104 to 106 boys per 100 girls” and that “sex ratios above this range indicate the use of practices and methods, including sex-selective abortion, to realize strong preferences for sons.” It lists such higher ratios for China, Azerbaijan, Armenia, Viet Nam, India, Georgia, Maldives, Taiwan, Pakistan and Samoa. China is a very large country, folks. If China keeps deselecting women, where would that lead to? Paying women less than men is against the law in many countries. Maybe we should also ask ourselves why most
countries don’t uphold such laws yet. (Around New Year 2017/18, Iceland announced that it will become the first country to demand evidence of equal pay.) What is the underlying ground for all this? And what is it that has pushed us – and more so in some countries than in others – into a crazy rat race of more more more, bigger bigger bigger, richer richer richer, stronger stronger stronger, smarter smarter smarter, faster faster faster and taller taller taller? This race seems to have progressed to the stage that the idea of merely having normal children worries some parents, and the idea of having a child who is mentally or physically “less” downright terrifies them. Having a child that is not “perfect” is “scary”. Why? I think that we really do need to ask ourselves why many of us have so much trouble accepting ourselves and each other that we would want to engineer our children as if we’re making super Kens and super Barbies. That we seem to assign financial values to accidentally acquired characteristics such as gender, regardless of task or accomplishment, may point toward the heart of the problem. We are getting too used to certain kinds of inequality, and we don’t want our children to end up on the bottom because we fear that no one will step up for them and look out for them. That’s immensely sad. So in essence, the low level of self-acceptance and the drive to want to create perfect children seem to reflect inequality in the world. In her October 2017 speech at Harvard’s Kennedy School of Government, Christine Lagarde said the following.
“IMF research has shown that excessive inequality hinders growth and hollows out the country's economic foundation. It erodes trust within society and fuels political tension.” Inequality exists not only within countries, but also between countries, even between countries that appear similar. The inequality within Britain is so immense that it pulls down the equality value for the entire EU, but the inequality between Britain and, say, the Netherlands results in the same attitudes and behaviors that you also encounter within Britain. People assign value and blame for circumstances that are beyond most people’s control. It is sheer fate that causes someone to be a native of the Netherlands or a member of Britain’s underclass. It can make the difference between being able to have the heating on in winter or not, between living in a brick (or concrete) home or in a tent, to be able to celebrate Christmas in peace and prosperity or not, to be able to afford visits to a hairdresser or not, to be able to look “presentable” or not. This seems very hard to accept for many people, yet hardly anyone disagrees when you point out that being born in subSaharan Africa or New York is due to fate and that this can make a huge difference. It is fate that makes some people part of the Rohingya or Syrian-born instead of American or German. These people all have the same human potential and they should all be allowed – encouraged, enabled – to flourish. Something similar goes for non-mainstream people within one’s own population. To a large degree, the hindrances people encounter are made by societies, not by nature. The good thing? If this is true, then we also have the power to change it. It’s wonderful!
But what was it that caused mainstream white males to occupy the first spot on the global pedestal of worthiness? Who defined that they are worthier than others? Is it also related to the increasing trend of fascism we appear to have in the world? Maybe the problem is the pedestal. Maybe the solution is to stop ranking people according to a biased set of indicators. Maybe the solution lies in putting ourselves in the shoes of other people much more often (and including this in our education). It would be good to do this not just with people who are physically or mentally different but also, as westerners, with people in the Middle East, Muslims, native Americans, the indigenous peoples of Canada, Australia and New Zealand, and with regard to white non-natives in the western world. It might help us relax more, too, and makes us less stressed and freaked out all the time. “Oh. They are just like us. Oh. Oh! Okay.”
Utilitarianism I believe that a large part of the reason why we don’t accept ourselves the way we are lies in utilitarianism, a view that had a huge impact on 19th-century Britain, where it sprung up and blossomed. It is a safe assumption that it also particularly influenced other English-speaking countries such as the United States, albeit perhaps less strongly. Inadvertently, utilitarianism seems to have created a tendency for callous excesses and the abandonment of morality or justice – “what is the right thing to do” – to the advantage of coldhearted calculations – “what is the cheapest thing to do” or
simply “what do I like best” in environments that were impacted by it. It may sound distant, “19th-century Britain,” but utilitarianism hasn’t disappeared. In fact, it has seen a bit of a revival since roughly 1970. After I relocated to Britain, I often found myself shocked by displays and expressions of callousness around me. I spoke with one landlord who considered it not sad but a great inconvenience to himself that one of his tenants had tried to commit suicide. It made him angry. He considered such tenants bad tenants, including the ones who called because the heating or the washing machine provided by him was not working. He confided in me that he felt that people who aren’t educated are useless and objectionable. I was so shocked I was unable to reply. Unfortunately, he also advises the courts in child custody cases. Maybe surprisingly, he is a good man, not a bad person at all. So how could anyone like that say such cruel things? Maybe Aldous Huxley gave the answer to that in Brave New World: “One believes things because one has been conditioned to believe them.” Another landlord tricked an older lady with beginning Alzheimer’s out of her home and got her to move into a bigger flat, with more rooms than she was able to use, and he said to me about a new building he was constructing “It’s only for tenants, so it does not have to be particularly good.” Appalled, I watched all sorts of people make each other’s lives more difficult than they needed to be and seemingly enjoy other people’s hardships (of any kind), making fun of their misfortune, even blaming them for it. In Britain, so I noticed,
the done thing was not so much to do the right thing but to do bad things and not getting caught. Kindness and compassion was something for fools. (Thankfully, there are still plenty of kind and compassionate people in Britain, in spite of that trend of unfettered greed at the expense of everything and everyone else.) There seems to be a general lack of conscience and accountability in the country, certainly also on the side of the government and among politicians, particularly on the side of the Conservatives, a generally accepted callousness and tendency to lie that I had not witnessed before. Where did this come from, I wondered? I set out to understand it. I started to read books and I sometimes asked people questions, such as why they were much more sociable than others around them. Victorianism (Puritanism) provided half of the answer, but something was still missing. It took me a long time before I stumbled upon utilitarianism and saw that this was the missing link that I had been looking for. By then, things had gotten much worse in the country. The British government had developed the habit of trying to get away with as much illegality as it could unless someone challenged the government through the courts, usually successfully, but even the courts were occasionally ignored. (Both Theresa May and Amber Rudd have been held in contempt of court. As Home Secretary, Theresa May also called for the abolishment of the Human Rights Act and she undermined the judiciary by making false statements to a rightwing audience about court judgments. The BBC called her out on it then. The BBC has meanwhile turned into a meek kitten
and for example no longer reports on large demonstrations in London, even if they pass right by the BBC's offices, while German television usually does cover them.) Unequivocally clearly, the British government was – is – going after the most vulnerable in society with a zeal that takes any decent person aback. At the same time, it was – is – trying to protect the interests of the wealthiest in the world, fighting the EU as much as it could – can – on this (for instance with regard to capping bankers’ bonuses, right after the banks had plunged the world into an economic crisis). Confusingly, the word “utilitarian” has come to mean “spartan” (austere) in most contexts. (Austerity is undoubtedly a utilitarian idea, particularly if it affects vulnerable groups in the population disproportionately.) A sparingly furnished bedroom – the kind we think of when we imagine life in a convent or in prison – is called utilitarian because it means using no more than the bare minimum that is needed to be able to carry out one’s tasks. Utilitarianism, however, is not about sparse furnishing, though it is often about cost-cutting. The word “utility” in relation to utilitarianism stands for something much closer to “pleasure” or “usefulness”. (The latter may be mostly in the sense that a string of genuine pearls would be considered more useful to – appreciated more by – a rich socialite than to the average Goth, even though the Goth might sell the necklace and get a year’s worth of food out of it as the Goth’s pleasure would rank lower than the socialite’s pleasure.) Two people drove utilitarianism, Jeremy Bentham (1748-1832) who invented it and his disciple John Stuart Mill (1806-1873)
who carried it forward. These two white men were far from evil, though. Bentham for example endeavored to make homosexuality a private matter instead of a crime (overlooking that the way he phrased it might also clear the way for seeing child sex abuse as merely a private matter, and it may be significant that particularly Britain seems to have a huge child sex abuse problem). Mill pushed feminism because he noticed how held back the woman he married had been by the customs in those days. It is interesting that he appears to have used the phrase “social disability” to describe it. It underlines that many “disabilities” are not problematic by themselves, but because of hindrances created by societies. It is difficult to show this more clearly than by considering women “disabled”, by society. Some of you may now have grabbed your mouse or a book from a shelf to look into the philosophical doctrine of utilitarianism, but that may not be very helpful. Philosophical discussions such as about rule utilitarianism versus act utilitarianism usually don’t appeal to the masses. They are perceived as esoteric hogwash. (That’s what many people may consider this book too.) That likely wasn’t different in the days of Bentham and Mill (although philosophy has only fairly recently become an exclusive academic pursuit). When we talk about the influence of utilitarianism, resorting to an explanation of how the philosophical doctrine was intended and should be applied is not very useful. (You could say that what we have is a very high number of bad car crashes in which many people perish, regardless of the intentions of traffic regulations.)
Utilitarianism’s major impact on British society must have come from what trickled through to the public. Bentham and Mill weren’t academics tucked away in ivory towers, after all. Bentham was a legal reformer and Mill was a civil servant and politician at the national level (MP), a public figure. Notably many of Mill’s general ideas were well known among the working class. While utilitarianism isn’t the overall encouragement of spartan conditions but the application of calculations to daily life, Bentham did envisage “spartan” conditions for certain groups of people. Bentham proposed to round up the beggars because their visible presence decreased the happiness of the more fortunate, according to him. He wanted them in workhouses, in an order that, also according to him, would reduce unhappiness. He wanted the deaf and dumb “next to raving lunatics, or persons of profligate conversation”, aged women next to “prostitutes and loose women”, the blind next to the “shockingly deformed”. This is the opposite of acceptance of human diversity. This is avoidance of anyone who is not mainstream. Bentham’s disciple John Stuart Mill pushed utilitarianism further into inequality by distinguishing between lower and higher pleasures. Biological pleasures, such as the pleasure derived from enjoying a sheer necessity – food – or from enjoying sex were lower pleasures, in his view. Mill considered reading Shakespeare a higher pleasure. (I don’t, by the way. I prefer good food over Shakespeare, any time.) Nowadays, it is still supposed to be a higher type of pleasure to read Shakespeare than to enjoy the Simpsons, even though in
practice, most people actually like the Simpsons more and therefore derive more pleasure from it, as Michael Sandel (Harvard) has often pointed out. Can’t we just say that they’re both equally valuable? Isn’t this the story of the emperor’s clothes all over again? Although other factors undoubtedly play a role too, all of this may also help explain why some people perceive humans with for example lower IQs as less valuable. Some people argue that persons with average or low IQs lack the ability to enjoy certain intellectual activities and that by “enhancing” the human race so that these so-called higher pleasures become available to everyone, we would do ourselves a favor and increase our collective joy. But who determines what the greater joy is? Why would it be better to play the stock market than to play soccer or watch a soccer match? Why would it be better to graduate from law school or business school than to graduate from art school? Why would it, by definition, be better to graduate from college than not to attend college at all but start a business or be a homemaker? Why would it be worse to read a thriller than to read a literary novel? Why would it be better to enjoy financial gains far beyond what we need than to support ourselves in a relaxed manner so that we have time to enjoy sunshine, rain and family life and help our neighbors instead of becoming increasingly stressed and depressed in 9-to-5 jobs to work hard to be able to keep up a fancy lifestyle? Why would it be better to eat a five-course meal than to devour a take-away pizza or barbecue some ribs in the garden? Why would it be better to watch a play or opera than to watch an episode of Grey’s Anatomy?
This division in higher and lower pleasures was mainly Mill’s response to the criticisms Bentham’s utilitarianism received. (Before Bentham, France had briefly seen something similar, by the way, proposed by Claude-Adrien Helvétius who lived from 1715 to 1771. But in France, these ideas were condemned so strongly – partly even banned – that they all soon disappeared from the scene.) In Britain, many saw Bentham’s utilitarianism as a doctrine for swine, to which Mill retorted that it was better to have an unhappy human than a happy pig, which he accomplished through his division into lower and higher pleasures. What he meant was that he saw no point in trying to make a pig happy as that would only result in a “lower” pleasure. In fact, it was probably better to have no pigs at all. Stop. Think about that. Consider the idea that there is no point in making “lower” beings happy. Ponder the notion that it is better to have an unhappy “higher” being than a happy “lower” being. (Isn’t this also what we see in Britain when its government imposes austerity measure after austerity measure primarily on those who will be hardest hit by these measures, not caring how many lives are lost as a result?) Yes, John Stuart Mill put great emphasis on intellectual pleasures at the expense of other pleasures, but please, let’s admit that this was no more than his personal opinion. He was home-schooled and his father started him on Greek at age 3.
He began learning Latin soon after, and read the Homer in its original Latin at age 7 or thereabouts. I think it is fair to say that Mill’s views on life were probably somewhat distorted. Wouldn’t he in fact have declared a large part of his own life a failure if he had openly placed more emphasis on other types of pleasure than he had indulged in? His mentor Bentham went to Oxford University at age 12, where he studied law. As he was well to do, he did not need a job and was free to pursue his own pleasures. He was one of the founders of what later became University College London. He also founded a utilitarian newspaper called the Westminster Review. I think we can also in all fairness say that Bentham wrote from the exclusive perspective of a privileged man who never required any form of employment and who never experienced what it is like not to have a limitless supply of safety and security. Did he ever experience any form of true need or harm? Still, Bentham felt that the principle of right and wrong was often no more than an expression of personal likes and dislikes (evidently not realizing that statements like these could partly clear the road for the abandonment of right and wrong altogether). Legislation should be based on calculations, on maximizing happiness, he said. But in utilitarianism, happiness was not defined by the person experiencing happiness or unhappiness, but by the person who had the upper hand in society. (Shakespeare equals happiness.) Not surprisingly, Bentham wasn’t a strong believer in individual rights, though he did feel that everyone should at least have the right to be protected from physical harm.
He seemed to believe that violations of rights were linked to people’s abilities, in the sense that less able people would not be able to perceive certain things done to them or happening around them, making the offences less serious or even permissible in those cases. It is important to note this. (Is it a greater offence for a shopkeeper to shortchange someone with an IQ of 120 than to shortchange someone with an IQ of 85?) Of Mill, we know that he looked down on the British working class – he considered them nothing but liars – but he wasn’t very fond of the British in general either. He considered them “parochial” and took pride in being able to read and communicate in French. Mill first visited France at age 14, where he enjoyed the “free and genial atmosphere of Continental life” very much. (But France had rejected the ideas of Helvétius.) Mill noticed that the French didn’t suppress their feelings, while 19th-century Britons did, and both Mill and his father didn’t know what to do with emotions. Again, is it any wonder that the younger Mill placed so much emphasis on intellectual pleasures? What Mill had not foreseen, it seems, is that this suppression or dismissal of feelings combined with utilitarian calculations could result in an occasionally somewhat psychopathic application of utilitarianism, the sweeping aside of moral principles to make way for (financial) cost-benefit analyses. The problem with utilitarian views is that they can easily be twisted to suit one’s personal aims. Unintentionally, Bentham and Mill had created a theoretical instrument that allowed people to do harm and explain it away, more or less according to the following reasoning.
All my actions are allowed, unless they cause harm (Mill, On Liberty).
If my actions cause harm, then a simple calculation usually suffices to justify my actions anyway (Bentham and Mill).
If my calculation doesn’t seem to add up in my favor, then I can assign higher values to some effects of my actions relative to other effects, for example by declaring myself more important than someone else, and then I can still get away with doing harm because it allows me to claim that I still do more good than harm (Mill, Utilitarianism).
(Has utilitarianism also resulted in the view prevailing in some circles that a person is naïve of unsophisticated if he or she objects to a certain course of action because he or she considers it morally wrong?) Overall, the 19th century heavily stamped its mark on Britain and many in Britain still cling to those days. (This has now also been remarked within the context of Brexit.) In fact, much of Britain’s society today can still be understood by recognizing the lingering adherence to and simultaneous rebellion against Victorian values as well as utilitarian reasoning. I think that utilitarian reasoning fosters inequality because it allows us to get away with anything as long as we perceive ourselves as superior. It is completely irrelevant that this wasn’t what Bentham and Mill intended. As I already briefly explained, all we need to do to get away with inflicting harm on someone else is to consider that person inferior so that we can claim that our own actions produce
greater overall happiness. After all, our own happiness surely ranks higher than an inferior person’s unhappiness. This enables us to say that we’ve increased overall happiness, an overriding theme in utilitarianism. Here are some examples. •
If 10 robbers kill one rich person to steal that person’s gemstones, you can say that more people will benefit from the theft of the gemstones and that it outweighs the harm done by killing the rich person. But if one poor person steals the gemstones, then you can say that the rich person loses more than the poor person gains because the poor (“inferior”) person is assessed as not able to appreciate the monetary or esthetic value of the gemstones, hence unable to get any happiness out of them. (This is an example I’ve made up.)
When the Ford Motor Company in the United States refused a recall of its Pinto, its baseline was that remedying the problem with the Pinto would be more expensive than paying out damages for the (“inferior”) people who were killed or injured as a result of Pintos bursting into flames. The “pleasure” for the company was greater if it simply paid out for the victims than if it prevented their deaths and injuries. (This example comes from Michael Sandel’s publication “Justice – What’s the right thing to do”.)
When a British politician (Iain Duncan Smith) openly doubled over with laughter in a televised session of Parliament when another politician was in the middle of explaining the plight of poor (“inferior”) people with
handicaps and chronic illnesses (“inferior”), and mentioned that deaths have occurred as a result of harsh cuts implemented by that politician, that laughing politician was applying his own utilitarian views. Cutting benefits allowed him to restore the country’s economy at the expense of the people whose benefits got cut. Utilitarian reasoning could even see those deaths as positive as the benefits of those persons no longer needed to be paid, which could be put in terms of achieving greater overall happiness or pleasure or gains. (This is an example from real life.) •
When British governments deliberately keep a large section of the population disproportionately poor, enabling such governments to realize major budget cuts in times of economic crisis such as the one that precipitated around 2008 as a result of bankers’ misconduct, you also have utilitarianism in action. Such governments treat the poor like cattle that they sell to be slaughtered or buy to be fed depending on the county’s financial situation. It is easy to see this as the result of a simple utilitarian financial costbenefit analysis. If you keep people disproportionately poor, it is much harder for them to fight back against anything you do to them. (This is an example from real life.)
When a group of people zips around through the streets, high on excitement, because someone has just jumped off a bridge to commit suicide, that’s utilitarianism in action. The pleasure experienced by the people excited by the suicide outweighs the lack of pleasure experienced by the
person who committed suicide. It gets even worse – or better, if you happen to use a utilitarian point of view – when a group of people egg someone on to jump. (This too is a real-life example.) •
Getting as drunk as possible as often as possible on the cheapest alcohol possible, that is utilitarianism too. Maximum pleasure at minimum cost. (This is another example from real life.)
Landlords or builders who openly state that a new building “is only for tenants, and therefore doesn’t have to be very good” or who use unsuitable materials when those materials are cheaper also practice utilitarianism. They consider lowering their expenses the greater good over raising the comfort of tenants or lowering their cost of living. (This is an example from real life.)
Convicting a person who is known to be innocent in order to pacify a larger group of people, who genuinely believe that person to be guilty, that’s utilitarianism. (This example is often mentioned in explanations of utilitarianism.) In Britain, there is no compensation for such wrongly convicted and imprisoned people, by the way.
The casual acceptance of mass child sex abuse too can be seen as a form of utilitarianism (and a private matter). How important is the misery of a few children when placed against the perverse pleasures experienced by a large number of politicians or a TV personality? This type of utilitarian attitude allows anyone to brush the children’s interests aside as of insufficient significance. (This is an
example from real life.) •
When shop staff deliberately takes advantage of persons they consider mentally (or physically) inferior, that’s utilitarianism. (This is an example from real life.)
When there is a greater chance that a poor (“inferior”) person stealing a sandwich and identified on CCTV is arrested and prosecuted than someone who commits far more serious crimes, could that be an expression of utilitarianism too? (This is an example from real life.)
Constant lying can easily be seen as a form of utilitarianism as well. The gains you accomplish by the lying outweigh the harm done to the people you lie to, says the utilitarian calculation. (This is a general observation.)
When police side with youngsters who have thrown eggs and stones at the house of a Frenchwoman in Devon, is that based on a utilitarian calculation? Did the “fun” the British youngsters had outweigh the discomfort and fear suffered by the Frenchwoman? (This is a real-life example.)
In London, some buildings have (back) entrances for the poor and (front) entrances for the wealthy. (Allowing less well-off tenants in their buildings can help developers get planning permission.) I hear the echo of Bentham’s teachings in this, in the idea that the rich might be offended (harmed) by the view of less well-off tenants using the same entrance. In New York, a block was found to have been approved with a so-called poor door as well as well, at about the same time as this came to light in London. There, it caused an uproar and mayor Bill De
Blasio said that he would take action to prevent this from happening in the future. By contrast, poor doors were already becoming standard practice in London by then. •
When Britain’s leaders feed the voters lies, for example about the ability of EU citizens to claim benefits as soon as they set foot in the country (which they can’t), they’re also applying utilitarianism. It can bring these politicians votes (on false grounds) and helps foster more negativity toward ex-pats and less interaction with them. Less interaction also means that it becomes harder to discover the truth.
As recently as 2006, then Prime Minister Tony Blair argued in a BBC interview that children should be taken away from certain parents, even before birth, even if for no other reason than that those children supposedly would “only grow up to become hooligans” and that this would cost society too much money later. This too is sheer utilitarianism. It declares some parents’ happiness less valuable because of their socioeconomic status.
Doesn’t particularly the kind of thinking shown in the latter example – social engineering – make the step to mandatory eugenics uncomfortably small? There is little place for respect for individual humans who are perceived as “inferior” or “diminished” in these (skewed) expressions of utilitarianism. Britain finds itself at the forefront of the new eugenics, wrote Fraser Nelson in British magazine The Spectator in 2016. He pointed out that Britain also laid the foundation for old-style eugenics. Old-style eugenics, too, emerged in the 19th century, along with Victorianism and utilitarianism.
“Congress acknowledged that society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment.” – Justice William J. Brennan, Jr., School Bd. of Nassau, Fl. v. Arline, 480 U.S. 273 (1973)
4. Alternative considerations
Costs, benefits and worthiness When you look into discussions about eugenics, you can come across the following two arguments or suggestions. 1) We harm physically and mentally different persons (nonmainstream people) by allowing them to come to life. That is firmly pushed aside by the widely accepted view that living is better than not living and that persons cannot be harmed by allowing them to be created and live, with the possible exception of “lives not worth living”. 2) Allowing some physically and mentally different people to be born harms those around them and also harms society because of the costs forced on society for their special education, elevators in buildings and so on. This is utilitarian reasoning. And it is biased. First of all, this not only overlooks that there is more to life than money, it also overlooks that anyone can fall down the stairs, break a leg and have trouble negotiating stairs for a while. Parents with young
children undoubtedly too have a few things to say about the presence of ramps and elevators. Second, who mentions for example the costs of regular education or education for the socalled gifted, the costs of highway construction, the burden that the use of highways and the manufacturing of cars poses for our health and for the environment? If we were to look at such costs in detail, we might have to conclude that so-called normal humans cost society a great deal more than non-mainstream people. But this is taken as a given. It is part of being “successful”. For whatever reason, we have managed to push ourselves into a ridiculous pattern that places too much emphasis on – and attaches too much value to – some of our characteristics and accomplishments while ignoring or even ridiculing others. “During the past few decades, we have lived in a culture that has privileged fame, money and power. Many of us have been led to believe that these were the only values worth pursuing,” wrote Paulo Coelho in the preface to his novel “The winner stands alone”, published in 2008. Is it doing us as much good as we think? Although we now live longer, we now also have depression as the world’s biggest health problem, according to the World Health Organization (WHO, 30 March 2017) and among those aged 15 to 29, suicide is the second leading cause of death. Major depressive disorder is more prevalent among females and, wait for it, among working adults. In 2010, depressive disorders were the second leading cause of years lived with… disability.
The financial cost of that depression epidemic is gigantic. Who mentions costs like these in the discussion of the costs of special education and elevators in buildings for people who are born physically different? One estimate based on a WHO-led study is that not appropriately addressing depression (and anxiety) causes a global economic loss of a trillion U.S. dollars every year, incurred by households, employers and governments. Dealing with depression well isn’t cheap either. Yet no one considers depressed people unworthy of life or feels that they suffer so badly that they shouldn’t be allowed to exist. So what would make a depressed person worthier of life than a person with, say, Down or a deaf person? In Britain, it is essentially forbidden to implant an embryo created through IVF if it has a risk for a condition like genetic deafness or Down syndrome (provided there is at least one other embryo that does not carry that risk). These risks do not always mean that the resulting person will actually be born with or develop the condition he or she has a risk for. The U.K.’s Human Fertilisation and Embryology Act 2008 contains the following text (with regard to IVF): “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop: (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”
“Embryos that are known to be of a particular sex and to carry a particular risk, compared with embryos of that sex in general, that any resulting child will have or develop (a) a gender-related serious physical or mental disability, (b) a gender-related serious illness, or (c) any other gender-related serious medical condition, must not be preferred to those that are not known to carry such a risk.” In the U.S., parents undergoing IVF are free to test and select embryos. However, they are often under considerable pressure (undue influence) to decide against bringing an embryo “who has socially disfavored genetic traits” to term, wrote Fordham in his 2011 article “Disability and designer babies.” Work referred to by him reported an abortion rate of about 80% for fetuses diagnosed with Down syndrome in the U.S. and this has already “changed the make-up of society”, Fordham pointed out. This has also been confirmed for other countries, such as Iceland. Reverse the situation for a moment. What if having Down syndrome or Duchenne was the norm and everybody else became seen as defective? What if you – if you are someone who is now part of the majority, the mainstream – were in the physically or mentally different minority? Would you want your “bad” genes erased from the gene pool? Would you like “your kind” to be excluded from life, for merely being the way you are, even though you too are a normal part of human diversity?
Real-life value of sought-after properties like high IQ and height It isn’t true that having a relatively high IQ value, a Ph.D. or to be of above-average height guarantees happiness or even merely traditionally defined success. First of all, high-IQ children and adults can also run into the normal difficulties that are part of life just like everyone else. People with high IQ values are not by definition highfunctioning individuals either. There may be a trade-off point, beyond which higher IQ goes at the expense of other abilities. Does every kid really have to become the next Hawking or a Fields Medal winner? Intelligence is not even the same as academic ability. A certain level of intelligence is needed, but academic performance can sometimes rather require the ability to do as told and/or the possession of well-to-do parents, depending on circumstances. Highly intelligent people are not always very good at meekly following orders. Moreover and ironically, some people consider high-IQ people “dense” and some school teachers consider high-IQ children annoying, disruptive and disinterested. There even appears to be a current trend to ascribe mental disorders to children with fast-thinking minds, as you may find out if you search the web for “fast minds”. Plenty of smart people occasionally wish that they didn’t ponder the world’s problems and could be happy with watching silly sitcom after silly sitcom. Plenty of not extremely smart people wish they were smarter. Many are happy just the way they are.
By way of illustration, to show you that high IQ is not a guarantee for anything in life, let me give you four examples from the lives of people with higher IQs. Take X whose IQ is 165. I have always highly enjoyed her company because I can often use two words to get something across to her whereas I might need twenty or more to communicate the same thing to other people. I love that she has such a fast mind. It’s wonderful! She became an associate professor in her chosen scientific field, but probably didn’t revolutionize it. (You’d have to ask her former colleagues to be sure.) Financially, she has done okay for herself. She’s always been a perfectionist and highly driven. She leads a pretty full and active life. She was abused and neglected as a child. You don’t see that when you look at her, but I know that it’s taken a toll. Her mother was a victim of the eugenics practices of Nazi Germany. Her mother also undoubtedly had a fairly high IQ and her dad as well. I have also known Y, a very intelligent woman who underwent ritual satanic abuse as a baby and toddler. The abuse had serious physical and mental consequences for her. You don’t see any of that when you look at her. You see a confident, cheerful and strong woman. And that is who she is. The effects of the abuse, however, claimed a large chunk of her life until a smart mental health professional realized that she has a dissociative identity disorder (DID, which is also still known as multiple personality disorder). The person in question has always been very open about this, so I know that I am not betraying her trust by adding these details, and I also know that it is not possible to identify her on the basis of what I am
writing here. At a relatively advanced age, she enrolled in a Master’s program. Since she graduated, she has worked at several government agencies, making a good living for herself. She came from a so-called good family. Her father was a physician, so most people will have considered him a societal success. His IQ must have been relatively high, too, otherwise he wouldn’t have made it through medical school. It didn’t stop him from doing what he did to his daughter. Then there is Z, a very bright woman with two very bright daughters. One was quickly turned into the typical caricature of the highly intelligent person because her IQ was assessed as 145. Her mother talks of her often. The other one, just as bright and certainly as effective and maybe even more so, is never mentioned. Because her IQ isn’t 145, but maybe a mere 130 or 126 or, heaven forbid, 119. One is going into photography, the other into journalism. Their mother appears to be completely unaware of her bias. The mother, also highly intelligent, never went to university, was a stay-at-home mom (whose husband committed suicide) for a long time and then started her own business. Is this mother aware that if her children ever end up in poverty, which can happen to anyone, their IQ may drop 15 points? More importantly, this woman loves both her daughters equally much when it comes to the crunch. Could it be that her love of IQ is a substitute for something else? But let’s not forget W, whose parents did not really want her, which created a strong drive in W to prove her worth. Fortunately, W was blessed with a very fast mind and great people skills, which enabled her to have an impressive career in
which she contributed greatly to science policy. Cruelly, W then developed a non-genetic incurable devastating progressive health condition. This also put a stop to one of W’s other wonderful talents, which she pursued in her spare time. I have added this fourth example to show how complicated bioethics topics are. Besides IQ, several other factors play a role in this example. What if the disease she developed is somehow linked to her IQ? I believe that W would have accomplished what she did regardless of whether her parents wanted her or not. I also think that her parents made her feel hurt and lonely at times. What about height? Does having a certain height really make you more successful in life? The Dutch are among the tallest people on the planet. It has something to do with our impressive dairy consumption. Many Dutch people are taller than I am, but I am never among the shortest people when I am in the United States or Britain, simply because I happen to be Dutch. Are Dutch people who work in an international environment – and therefore among generally shorter people – happier and more successful than people from other backgrounds? Am I happier, more successful and better able to compete because I am taller than most of the Brits around me? Would I really have liked to bump my head more often? Would it please me to have increased my arthritis risk? (The taller you are, the greater your arthritis risk, recent research has shown.) I’ll tell you what I don’t like. The claustrophobic feeling I sometimes get when most people around me are taller, particularly in crowds. That I’ll admit to. I like it when people are my size. It makes communicating so much easier. Do you now need four examples of people with regular IQs
who haven’t suffered any great tragedies and are happy and healthy? Or should I contrast the lives of people with blue eyes and blond hair with the lives of those with brown eyes and dark hair? Perhaps particularly parents with little self-esteem will seek to “enhance” their children, in the same way that they also choose a particular house and a particular make of car, to make them look better and prove something to the world. Z, in my four examples of people with high IQs, is quite sensitive to status symbols and other forms of outward appearances. X, Y and W aren’t. I wonder what will happen if a super-enhanced baby ends up paralyzed as a result of a traffic accident at age 4, or age 14. Will the parents return her to the IVF clinic? If a little boy designed for a career as a violinist or pianist breaks his fingers in a way that prevents that musical career, what are the parents going to do? Give the child up for adoption because they’ve been cheated out of their perfect child? (Let’s consider this apart from the fact that by the time we can have super-enhanced babies, we’ll also have better solutions for paralysis and broken fingers.) Not only is there a risk at that point that the parents would no longer be willing or able to support the child at the same level, the child in such a situation could be at an actual disadvantage because everything in his or her life will have prepared the child for anything but, say, life in a wheelchair. The child’s enhanced abilities may even lead to greater frustration than would normally have been the case. To be a wonderfully skilled and
talented piano player but no longer being able to play must be so painfully frustrating. Will the child become incredibly driven to prove his or her worth to the parents? Parents who feel happy and secure and who love their children unconditionally may feel much less inclined to tweak their children’s genetics. We all know people who don’t have stellar IQs and whose children may or may not have stellar IQs either, who shoot hoops, watch a lot of TV, enjoy pizzas and BBQs and live happily ever after without discussing politics or ballet or philosophy at the dinner table. They probably also diligently sort and recycle the waste they produce and rescue the occasional animal. What, if anything, could be wrong with that? Having certain attributes doesn’t guarantee anything. The attributes that can potentially be engineered into children in the future not only don’t guarantee the kind of success the parents envision for their children, but don’t guarantee their children’s happiness either.
Fashion effects There is also the question of fashion. This topic is often overlooked in discussions of human enhancement, but it is a crucial one as it provides perhaps the strongest argument against wanting to tweak and supercharge our offspring. In his 2008 paper “Remarks on human biological enhancement,” Henry Greely (who is a professor of law at Stanford University), pointed out that when “rhinoplasties first started in the 1910s and 1920s, people wanted long aquiline noses, similar to Roman noses, and then very quickly the fad changed and
people wanted short, button noses. The first people who got nose jobs actually ended up, ten or fifteen years later, regretting that they had moved from what is now the favored affection to something different.” We see cycles of fashion everywhere, of course. The Rubenesque body was once the ideal and still is in many countries. In the west, that ideal evolved into the emaciated, airbrushed body of the cover girl and runway model. Breast implants and botoxed lips got superimposed on them. Many people seem to think that the race is on for increasing height, increasing this and increasing that. They may be right, but it is also conceivable that in a world in which everyone is tall, short will become the new ideal. Short people take up less space on buses, trains and airplanes. If we want, we can even make a utilitarian case for short people. Short people cost less. They require less food, their clothes cost less and short people can sleep in smaller beds. They may occasionally have to use small household steps to reach the upper shelf in their kitchen cabinets, but the costs and practical aspects of that are negligible relative to the benefits of being short. So who can guarantee that high IQ and all the other attributes many parents in the west hope and strive for will remain desirable? Dark, “intelligent-looking”, horn-rimmed glasses have repeatedly gone in and out of fashion, along with the supposedly more “intelligent” dark-haired and dark-eyed look for women. When these looks go out of fashion, they not only go out of fashion, they become shunned. At the moment, high IQ may be hot in some circles, but high IQ is also sometimes treated as a form of disability and has not always been popular.
Things change. All the time! Even the image of youthfulness, another heralded ideal, is changing. In 2016, I think for the first time ever, we saw gray and white hair come in fashion for young people. Older women with gray hair have been coloring their hair for a long time because colored hair used to stand for good health, energy, well-functioning brains and youthfulness. All these years, the cosmetics industry has been working on a pill that will make gray hair disappear and restore natural hair color. For so long and so often, gray and white hair in older women was misinterpreted as a symptom of neglect (lack of personal hygiene), of bad physical health and of declining mental capacities. Then all of a sudden, young women started bleaching and dying their hair gray and white in large numbers. They broke the connection between gray and white hair with old age and declining health. I am still occasionally shaken awake when I see an older woman who then turns around and looks three to six decades younger than her gray hair seemed to indicate. I love it! So, enhancements sought by selection or manipulation of our offspring may actually set our children back as grownups. Perhaps more than anything, the fashion aspect reveals the foolishness of some of the new eugenics. I think we will eventually get to the point where we will be able to change things like skin tone, eye color and hair color and, heck yes, probably also IQ and height the way we currently change clothes. We’ll start interfacing more and more with technology as well. That is when things become interesting and what is technologically possible will open up possibilities for
everyone, in a much more flexible and inspiring way than mere genetic tweaking of our offspring will be able to do. Don’t believe me? Consider this. When we look for a new home, most of us prefer a house with character over a box-like house or flat among dozens or hundreds of other homes that look, feel and essentially are exactly the same. We like diversity, and it benefits us.
Potential consequences fundamental values
As you’ve gathered by now, I find it worrisome that the new eugenics practices run the risk of turning children into products that have to meet certain expectations of parents. Of course, that parents have expectations for their children is nothing new and already occasionally leads to excesses. It inspired Londonbased author Joseph Connolly to write a bulky novel called “Style,” a “brilliant exposition of maniacal parental ambition within a society in thrall to celebrity and fashionable acquisition” published in 2015. But that isn’t my main concern. The unrestrained creation of children according to specifications would increasingly skew parental expectations and ambitions and might push them out of control, not just for a few individual parents, but as a general trend. I think that this could hollow out the mostly valued principle of parenthood, the concept of unconditional love. Allowing the deterioration of this concept and risking its eventual disappearance may have deleterious consequences for humanity as it is the glue that holds us all together. Maybe it is what ultimately keeps us from
seeing each other as enemies. The disappearance of this principle may even end up changing the way our brains function, severing old connections and creating new ones. That is not to say that this would definitely be a bad development, but we simply don’t know at this point. It might have disastrous consequences and destroy our societies. We don’t know whether something else – which does not have to be negative – would take its place or not. Traditional parenthood itself can be replaced. Commune life, kibbutzim and other alternative forms of living have shown that. But in many of its applications, the new eugenics doesn’t even pretend to substitute good parenthood by anything other than consumerism. In fact, if we abandon unconditional love as the basis of good parenthood, we may be promoting psychopathic behaviors. (This is probably about the same as the abandonment of the principle of solidarity; see next paragraph.) We might then push our entire society toward that far end of the human range from extreme altruism to psychopathy. (Watch the TED Talk by Abigail Marsh, who is based at Georgetown University.) In his article “The case against perfection” published in the Atlantic in 2004, Michael Sandel (who was a member of the U.S. President’s Council on Bioethics at the time) referred to (social) solidarity within this context. If fate no longer controls most of our destiny, it becomes harder and harder to feel solidarity toward others, he argued. I agree. I think he refers to what I call the glue that binds societies. I think that there is a distinction between inclusive solidarity, which is what Sandel
seems to have in mind, and exclusive solidarity (protectionism), however. The new eugenics may initially encourage exclusive solidarity, the selective protection of “our kind of people” over the protection of others. It could lead to the deliberate creation of different classes of human beings. This theme was explored in the film Gattaca and also features in the novel “The ultimate brainchild” by Richard Bintanja. Thankfully, in the (distant) future, we may be able to avoid the erosion of inclusive solidarity by not only having well-balanced regulations in place, but also subsidizing the new eugenics for everyone. We may even have to make some forms of eugenics mandatory – and as “blindfolded” as possible – to avoid increasing inequality and creating separate classes of humans. Blindfolded application of the new eugenics might mean, for example, that we do not give just a few people some genes (the ones for which parents have a personal preference). Instead, we could give everyone a gene for musical ability, if such a gene exists, a gene that enables the enjoyment of chess if such a gene exists, a gene that allows everyone to create magnificent visual arts, if such a gene exists, and a gene that enables sports excellence, if such a gene exists. Why not? There is another fascinating twist in our future that may end up solving many issues and take our lives into a completely different direction. We will no longer have traditional gestation in the future. As a woman, I have been acutely aware of the limitations that some of my physical characteristics put on my achievements since I began menstruating. I was later pleased to discover that at least I could avoid being surprised by the start
of a menstruation in the middle of geological fieldwork by using a different kind of (hormone) pill, in consultation with and suggested by my family doctor. In the workplace, women are also still being discriminated against in the workplace for no other reason than that women can get pregnant. I have been dreaming, so to speak, of that day when women will no longer have uteruses and no longer have to get pregnant. But in discussions about human enhancements I never see this mentioned. I never see the tremendous and very real costs of menstruations mentioned. Doesn’t particularly this point out how foolish, how biased, some of the fantasies about genetically enhanced children are? We do not want what is better for society or better for our children. We want what we like. (Yes, Jeremy.) (See Chapter 3.) I would like to see women stop being burdened by their uteruses. That does not mean that I want women eliminated from the planet. To the contrary. Where is this going if we also couple this to eugenics? I will let you ponder that for a while. A lot of women will be furious at my suggestion that it might be a good idea if women didn’t have uteruses. I can easily see uteruses as creating an impairment and hindrances for women, as something that stops many women from flourishing, however (even though a lot of this is imposed by society). If you take my example, my wish, you can draw a parallel with many other cumbersome “conditions” for which people may need medications and tools or equipment, the way women do too, as a matter of life. Yes, we bleed. Yes, we need expensive products to help us deal with the bleeding at work and are
supposed to hide this from the world. Yes, many of us are in pain during our periods. Yes, many of us lose days of work or miss exams. Yes, many of us lose so much blood we become anemic. Why does no one ever mention this in these discussions? Why is one “condition” seen as good and another seen as bad? Remember that John Stuart Mill used the phrase “social disability” with regard to the hindrances society created for women in his days. You can see the parallels. Society created major impairments for humans with a uterus. And then society slowly started to get over it and began to allow women to flourish too. In the future, women will no longer have functional uteruses, maybe simply through evolution. Before that time comes, however, we’ll already be growing our children in incubation pods where we can witness their growth and development intimately, leaving the parenthood connection intact. That may be the time when we can apply genetic selection and gene therapy freely and develop a more product-like view of children. But it should be one that puts a duty to nourish and care on the shoulders of the parents or carers, not the duty to perform according to expectations on the shoulders of the children. Perhaps having children at all will become a privilege or a duty with which only certain individuals will be tasked. This development will also settle all discussions on the topic of abortion, which is rapidly becoming outdated. The future of artificial uteruses (artificial wombs) for humans will be upon us much sooner than we expect.
But we’re not there yet, so I have to get back to the discussions we are having right now. Frances Kamm (who just like Sandel is based at Harvard University) argued that a parent’s unconditional love includes seeking better attributes for a child, in her 2005 comment on Sandel’s 2004 article in the Atlantic. That reminds me of what Joseph Connolly describes in his work “Style” and I consider that a contradiction. The attributes are not sought for the child but for the parent. After all, how can “seeking better attributes for a child” be an expression of unconditional love? Isn’t that unconditional love followed by “provided that the child complies with what the parents want the child to be”? (It is not unconditional love. It is unconditional possessiveness.) And, who determines what is “better”? Kamm saw that too and came up with a concept she called sufficientarianism, which does not seek perfection but merely what is sufficient. This appears to suffer from a similar problem. Who determines what is sufficient? But Kamm saw those pitfalls as well. Her conclusions include the following: •
“...could we really safely alter people, not making disastrous mistakes?”
“A deeper issue, I think, is our lack of imagination as designers.” Her concern was that “people will focus on too simple and basic a set of” what they consider good qualities.
Kamm also wrote that in her eyes, the duty to help others has
to do with respect and concern for the values of other persons, regardless of whether or not we believe that they are to blame for the situation they are in. This was a comment on Sandel’s view that the more chance – fate – there is in our life choices, the more reason we have to share our fate with others (his idea of inclusive solidarity). I believe that inclusive solidarity is largely based on whether we are able to identify with others or not, and yes, fate has something to do with that. If we can see that we are all slaves to fate, it is easier to recognize that we’re all in the same boat. But humans aren’t perfect. In real life, many people are more insecure and, as a consequence, more judgmental than Sandel and Kamm appear to be and/or envision. I believe that this is at least partly linked to inequality. Less secure people – people who feel easily threatened – respond to other people’s misfortunes in a more judgmental way because they want to be able to tell themselves that such misfortunes would never happen to themselves (and use that as a reason for not helping someone) or that if it did happen to themselves, someone else would help them (and then they use that as a reason for helping someone). In the first case, they distance themselves from the unlucky person and don’t identify with him or her and in the second, they identify with the unlucky person. Most people seem completely unaware of it when they do this. It is one of the reasons why women used to get blamed for getting raped, and still often do. It is also one of the reasons why homeless people and people in poverty are often blamed
for their circumstances. People who make these snap judgments distance themselves to be able to reassure themselves subconsciously that they will never be homeless and will always have ample food and that their kids will always have everything they need. They believe that other people’s misfortune has nothing to do with fate. But fate is usually the main factor. Anything can happen to anyone. We don’t want to acknowledge it because we tell ourselves that that kind of powerlessness sucks. We want to be in control. What matters in societies is the degree to which people can identify with each other, and see how much they have in common. This ability to identify with each other also may explain why egalitarian societies function better. In egalitarian societies, everyone is better off, even the ones at the top. A suggestion that Julian Savulescu (Oxford University) made in an interview for Dutch TV, namely assigning children (embryos) to people randomly, might be a good solution.
Emancipation and education needed eliminating non-mainstream diversity
That utilitarianism (as explained in Chapter 3) may have resulted in the notion that it is okay to take advantage of mentally and physically different persons and exclude them from a large part of society doesn’t make it okay. Neither does it make it okay to put the blame on these minorities. It is society that needs to change to allow non-mainstream people to flourish, and society is changing.
“I want to go to university,” wrote Nicolas Joncour, a 16-yearold French piano student, in an article in the magazine Zoom in 2016. “A decent life in France is practically impossible for an autistic student, especially if you are nonverbal like me. In special schools there is no real education, and the psychiatric hospital remains the norm. As my mother encounters more and more difficulties to enroll me in a normal school, the only solution to an equal opportunity is maybe to leave France. I want to go to university to study the Holocaust as people with disabilities are still destined to horrific fates.” Rather than eliminating certain minorities from the population through eugenics, educating those with supposedly superior mental and physical capacities is the better solution. We should attempt to modify abusive attitudes and behaviors and make societies much more inclusive. Again, this change is underway. As I’ve hinted a few paragraphs ago, not that long ago, women were seen as mentally deficient and as highly inferior to men in spite of the fact that they make up approximately 50% of the population and cannot be considered a literal minority. Among other things, women weren’t allowed to vote, own property or go to university. The craziest arguments were deployed to keep women out of universities. The brain activity might damage women’s reproductive systems, it was said, and also that women’s reproductive systems made it impossible for them to engage in intellectual activity. Even the length of women’s thighbones was championed as a reason for keeping women out of universities. We haven’t completed women’s emancipation yet, not by a long shot. Today, women still receive up to roughly 25% less
than what men get paid for the same work and at the beginning of 2017, a Member of European Parliament openly stated that women should be paid less because “they are smaller, weaker and less intelligent”. Misogyny – hate of women – is still considered so normal that some countries even seem to take pride in being openly misogynistic. (The thinking behind it seems to be: “Why should women have human rights and be treated with normal respect? They’re only women.”) Of course, we haven’t completed racial emancipation yet either and several other processes of acceptance and inclusion. But we now talk about trans people openly, whereas only half a century ago, we still hid facts such as that not all people are heterosexual. (Few people are 100% heterosexual, in fact.) The process of emancipation of mentally and physically different persons began only recently. We are finding it increasingly normal that buildings have ramps so that wheelchair users can easily access those buildings as well. In hindsight, isn’t it odd that it took us so long to think of this? We constructed all our buildings in such a way that they almost deliberately kept some people out. Whose fault is that? In an appalling display of carelessness, airlines often damage the wheelchairs they stow away as luggage because they are not allowed in the cabin, which can leave people house-bound for many months. Taxis often refuse blind people if they have a guide dog. “In the end it is events such as these, rather than my visual impairment per se, which make me disabled,” said a guide dog owner in London about it (to www.guidedogs.org.uk).
We need to educate children better about the choices adults have, including a woman’s choice not to marry and have children but focus on a career (whether in the stock market, music or visual arts) or some other intellectual pursuits instead and a man’s choice to relax and focus on family. We need to tell children that if a company employs the ten best males in a field, it isn’t employing the ten best people. The same holds for people with different skin tones, and people who are mentally and physically different, and so on. We should also include more human diversity education in our primary and secondary school curriculum. Perhaps we should have days on which all children for example wear dark pads covering their eyes, days on which they all wear headphones that make it impossible to hear any outside sounds and days on which they are not allowed to speak but have to communicate in different ways. Those other ways of communications should not be limited to texting, typing and writing, but include using a piano or drumsticks. This way, we let children experience that impairments are not necessarily inherent to certain conditions, but are mainly created by how we as a society deal with human diversity. Impairments are also created by our educational system itself. It caters mainly to people who are roughly average, but for example people with forms of autism learn differently and apply knowledge differently. So do high-IQ children. It’s not their fault that our academic system hasn’t undergone much innovation in a long time and is fairly rigid. It doesn’t only hamper people with autism or high IQs, it also holds back creative people.
“All kids have tremendous talents and we squander them, pretty ruthlessly,” said Ken Robinson in his 2006 TED Talk (once at the University of Warwick, now based in Los Angeles). He went on to explain that “we are educating children out of their creative capacities” and then told the story of Gillian Lynne, the choreographer behind Cats and Phantom of the Opera. When she was growing up, the teachers at her primary school thought she had a learning disorder (nowadays, they would have said she had ADHD) and she was sent to a specialist. To cut a long story short, the specialist concluded “Gillian isn’t sick, she’s a dancer. Take her to a dance school.” and fortunately, that’s what Gillian’s mother did. Now Lynne is accomplished in what she’s good at and loves to do. (She’s also a multimillionaire.) Not all of us are that fortunate, however. “Somebody else might have put her on medication and told her to calm down,” Ken Robinson concluded. (Watch the TED Talk by Ken Robinson. It’s worth it.) (In the story of Gillian Lynne, you may also hear the echo of Mill’s idea that intellectual pursuits are worthier than other undertakings.) We are making progress, though, because once upon a time, everyone who was different was stuck in institutions, kept away from the rest of the world. Perhaps it is highly significant that this also used to happen to people perceived as “difficult”, people who “got in the way”. (It was for example done by the LAPD in California nearly a century ago and through abuse of Florida’s Baker Act until the end of the 1990s.) Who are we, the ones in the majority (or, in the past, the ones who happened to white and male), to declare the lives of
mentally and physically different people useless or less valuable? Who did white men think they were when they declared women unfit for so many roles that white men fulfilled and withheld privileges that white men had access to? Who are we to want to declare Mélanie Ségard’s dream of presenting the weather on TV less valuable than my old dream of having my own cutting-edge research group in marine biogeochemistry because she has Down syndrome and I don’t? (She succeeded. I didn’t.) Who are we to want deny Stephen Hawking his life because he a form of amyotrophic lateral sclerosis (also known as motor neuron disease and Lou Gehrig's disease)? Who are we to consider Stevie Wonder’s life a waste because he is blind? Who are we to want to reject President Roosevelt’s life as useless because he was in wheelchair? He fell ill at 39, remained paralyzed from the waist down and was a wheelchair user for the rest of his life, but this was a well-kept secret for a long time. Other examples of successful mentally or physically different persons are Judith Scott (textile artist with Down), Derek Paravicini (blind pianist with a form of autism), Helen Keller (blind author, political activist and lecturer), Frida Kahlo (painter who contracted polio at 6 and was in a very serious car accident at 18, killing her dreams of becoming a doctor), and Ángela Bachiller (a city councilor/council woman with Down,
for the Spanish city of Valladolid). The average life expectancy of persons with Duchenne muscular dystrophy is 26, but some Duchenne patients live into their 30s or 40s. The world-famous automotive engineer Alfredo Ferrari, son of the car maker, had Duchenne. Actress Teri Garr has MS, Michael J. Fox has Parkinson’s. Are these really lives not worth living? Of course, the point is not that most of these people I’ve just mentioned became famous. The point is that the lives of mentally and physically different people are just as valuable as the lives of mainstream people. Mentally and physically different people aren’t “less good people”, they aren’t defective products that we should reject. Human life occurs along a very broad spectrum of variations and we should celebrate that diversity.
Mentally different people In addition to physically different people, there is also a wide variety of people who are mentally different but physically mainstream. During the writing of this book, I badly struggled with the decision what to say about mental health issues. I don’t know much about them from within a professional context, but learned a few things the hard way, and mostly in Britain. What should I say and what should I keep to myself? How could I say what I wanted to say without accidentally revealing the identity of people I was going to write about? Should I worry about friends or acquaintances reading this book and then either recognizing themselves or incorrectly
assuming that I was referring to them and feeling hurt for some reason? How could I acknowledge the seriousness of some of these conditions and the devastating effects they can also have on other people without sowing intolerance? How could I avoid turning the topic into a circus spectacle? It took me a while to find the kind of balance I was looking for. I hope I ended up with the right one. This is important to me as I don’t want to give the wrong idea, for various reasons. I want to explain that. I am currently based in Britain, a country that ticks very differently from other countries in the world. Opinions expressed in Britain with regard to eugenics, poverty, physical health and mental health often make my skin crawl in the same way paintings by Hieronymus Bosch can be very unsettling. There are people here who ascribe the effects of Britain’s excessive socioeconomic inequality to genetic “flaws” (in line with Margaret Thatcher’s views, I should add) and suggest that the application of eugenics can solve the problem. In reality, that socioeconomic inequality is the result of a persistent feudal mindset, among other things, in combination with the lingering influence of utilitarianism, low wages and high prices. Britain’s governments are often dysfunctional and abusive, targeting the weakest in society to make up for the errors of the well-to-do and balance the books. The problem has a lot more to do with British politicians laughing out loud in parliament at the plight of the plebeians – and considering that perfectly acceptable – than with genes. In fact, it has nothing at all to do with genes.
In experiments, worries as a result of poverty depressed people’s IQ values by up to 15 points. Constant financial stress – caused by worrying about where to get food from, what to feed the kids, how to keep the home warm (using the heating in winter is a luxury in Britain), paying the rent in a country where renters have little protection, and whether to pay the rent first or other equally important bills first – takes over a person’s life and pushes everything else to the background. You go to bed with it, you wake up with it and it is on your mind all day long. The powerlessness turns into a downward spiral and, if you ever had one, your vista contracts rapidly along with your prospects. Many things are more expensive when you’re poor and various fees and fines can pile up quickly. There is also plenty of medical research that shows that too much prolonged serious stress can impact physical health very negatively and poverty itself is also linked to bad physical health. By way of illustration, consider that many of Britain’s rental homes are rife with black mold, partly as s result of landlords using the cheapest, often inappropriate, materials and the least efforts possible. If governments keep a large section of the population in a socioeconomic cage, as British governments tend to do, you shouldn’t blame those people for being locked up in a cage or blame it on their genes, but get them out of the cage and allow them to thrive. It is particularly easy for governments to target people who wrestle with the combination of poverty and mental health or physical challenges financially. It is so easy to pull out the rug from under them to help balance the country’s budget. They’re not in a position to do much and fight back.
And that is not all. Consider these two examples. According to John Pring, who is a columnist for The Guardian and runs the agency Disability News Service, among other things, one man here who goes by the name Daniel Marshall just went through a so-called PIP assessment (fitness for work, eligibility for financial support on disability grounds) while he suffered a grand mal seizure. The assessment continued. Nothing else was done. The rules say that the assessment must take place, no matter what, otherwise the person in question likely loses his or her financial support (temporarily, partly or permanently); disobedience and initiative are frowned upon. After the assessment, the man suffered several more seizures and was taken away by ambulance. A year ago, another man, Lawrence Bond, who was seriously ill and had nevertheless been declared fit for work (a decision that he was still countering through appeals), arrived at one of his related JobCentre appointments visibly unwell, but the appointment proceeded as if nothing was wrong. The rules say that the assessment must take place, period, otherwise the person in question will very probably lose all or part of his or her financial support (temporarily or permanently). Initiative rates as a sign of disobedience. The man died shortly after the appointment, on his way home. Staff had faced “a terrible dilemma” and had obviously decided that the rules about appointments took precedence over the man’s welfare. Siobhan Fenton wrote about this incident in The Independent. Man dead, one benefits recipient less. That’s utilitarianism in action. All of this and much more has made many people in Britain
very angry and some are highly sensitive regarding anything to do with illness or disability, or poverty. So when you write about eugenics, illness or disability, anything you say can very quickly be interpreted incorrectly or taken out of context and assumed to be as shortsighted as the medieval hogwash that many authority figures spout in Britain. So I hope that I have made my position sufficiently clear now. Generally speaking, we don’t seem to think about people with mental conditions the same way as we think about people with physical conditions. We seem to tend to blame people for their mental conditions, as if they have a choice in the matter. People with cancer or kidney disease aren’t told to get over it or snap out of it, but when even someone is in mourning after the death of a parent or for a baby who was stillborn, there are always people who tell the person to get over it and move on. Or grow a spine. We seem to think that people have much more control over mental conditions than over physical conditions. This is not true. First of all, physical health affects mental health and vice versa. The first symptom that someone is falling seriously ill, physically, can be that he or she is often in an uncharacteristic foul mood. I first became aware of this in my teens through the books of Irmgard Smits, who started writing after she was diagnosed with TB. She was being uncharacteristically recalcitrant and getting into fights with her mother, who realized that something was off and took her to the doctor. Recent research has revealed that the cytokines released during the development of cancer may cause depression long before
someone is diagnosed with cancer (though more research is needed on this topic). Many people with hay fever know that hay fever can affect their mood (irritability). There are also connections between non-celiac gluten sensitivity and mood (disorders), connections between gut health and schizophrenia and even between pesticides and depression (including suicidal thoughts). Second, provided we are not poor, we often have more control over our physical health than we admit or are aware of (and maybe less control over our mental health than we would like, though a Zen approach can help). These days, many people believe that they can eat as much as they like of whatever they like without having any physical effects, including bingeing on chocolate and candy day after day. Parents of kids who are sensitive to certain artificial food colorants differ in opinion. However, for a healthy person to remain in good mental and physical health requires discipline and routines, for which ideal circumstances are highly conducive. It is easier to eat as healthy as possible and be very fit when sufficient money is coming in and you have enough time on your hands over which you have control. (Working nine to five at someone else’s place every day may not be the smartest idea we’ve ever come up with.) It is also very easy to be a shining beacon of joy and serenity when you live in a sheltered Buddhist community that provides all your basic needs and in which you do not need to worry about paying the rent, and don’t have to take your mother-in-law to the dentist, your kids to soccer practice and ballet lessons and also host a dinner party the same evening. But some people are born with a mental condition (or a
propensity for it), like others are born with a physical condition (or a likelihood of developing it). This may become evident very soon after birth or may only become clear when the child is developing into an adult, or even later. In any case, it isn’t their fault. What shall we do with them? Within this context, I have to mention Julian Savulescu (currently at Oxford University), who holds provocative and controversial views, particularly with regard to mentally different people. He often gets the floor as a speaker because of the “spiciness” of his views. (That same brand of “spiciness” also attracts some people to English media personality Katie Hopkins or American property magnate Donald Trump.) Although I sometimes (partly) agree with him, I find his approach highly worrisome and his views often teetering on the edge of reasonableness or rationality. He uses the kind of examples and images that many people in Britain generally assign to tabloids like the Daily Mail and offers simplistic pseudoscientific solutions. I think that how most of us see people with mental conditions – and particularly personality disorders – is either based on personal experiences we have had or on what we’ve seen in films, read in fiction and the news media. There appears to be a lot of paranoia, and embarrassingly little true understanding of these conditions. All of this can undoubtedly contribute to the associated impairments, whether real, perceived or imposed, just like society creates impairments for those who are physically different.
Mental conditions are much less easy to assess, also within the context of eugenics, than physical conditions and they are even harder to explain. I am not a psychiatrist or psychologist so my own views are mainly limited to what I’ve read here and there and to who and what I have run into during my lifetime. I do know that mental health assessments suffer greatly from biases related to factors such as gender and culture. In some cultures, avoiding someone else’s eyes during a conversation is merely a sign of respect, for example, and in other cultures, not being married still burdens a woman with a stigma. Today’s society still applies a double standard in many areas. When Andreas Antonopoulos talks about how he immersed himself in everything Bitcoin to learn as much as possible about it and adds that he wants to keep learning as much as he can, people think it’s fantastic. When a woman says something like that, people wonder if she might be psychotic, schizophrenic, in need of a man in her life or a bedroom life. I am a woman, have always been highly driven and some see me as a workaholic, but if you enjoy what you do and fully integrate your work with the rest of your life, instead of keeping them strictly separated, you are living life to the full. I too like working late (though I do it much less now than I used to). I developed the habit in my teens. When the world has gone quiet outside, your concentration becomes much higher and you can end up in a wonderful state of flow during which you are highly productive. Research has shown that having one single desk lamp on helps you concentrate, which appears to support this idea that working late is good for your concentration. Fewer distractions, greater focus. There is
nothing creepy or psychotic about it. If your surroundings are busy, lively and loud during the day, working late can also be a wonderful solution. I know many (mostly self-employed) people, men and women, who often work late. Yet one time, a few decades ago, when I left a message on someone’s office voice mail in the middle of the night, concerning something I was working on, knowing that the person would find the message the next morning, it later turned out to have raised great concern. I found that concern unsettling and I can’t help wondering whether my message would have caused any concern if I had been male. I first experienced what it can mean to have bipolar disorder when I had a neighbor with that affliction. He told me about it. He said that his (rare) episodes were a much bigger problem for him than for the people in his surroundings, for example because he had great trouble finding his phone again after he’d had an episode. I agreed. He often played music on his stereo installation in the middle of the night and that was a much bigger problem for me than his rare episodes were as the floors were very thin. I talked with him about it and bought him a set of headphones. I remember one episode during which he threw some things out of the window. Picture the classic scene in which a couple is fighting and she throws some of his clothes out of the window. You laugh or you shrug. No harm done. Later, I have cooperated many times with a business owner who has a permanent bipolar disorder. She also has a Ph.D. and taught at the university before she decided to start her own business. On the right medication, her disorder is perfectly manageable, but she did have to fight to get that medication.
As far as I know, she was hospitalized twice, both during times of major hormone fluctuations, such as after child birth, which can also cause problems for women who do not have a permanent mental condition. Here in Britain, I am aware of one person with bipolar disorder in my neighborhood. She appears considerably much worse off than the two people I knew in the Netherlands with this condition. The difference is so immense that I was actually astonished to hear from her that she has bipolar disorder when I decided to talk with her one day. (I thought she had cerebral palsy or something like that.) Could this be because she is not on the best medication for her condition? Is it possible that she might have flourished the way my Dutch colleague has if she’d been on a different type of medication? Could it be that she doesn’t actually have bipolar disorder? Schizophrenia is a condition about which I know even less, but I do know that the public often mixes it up with the vastly different situation of dissociative identity disorder (also known as multiple personality disorder), which comes about very differently. The son of a Dutch couple I know developed schizophrenia when he was a student at university. It appears to me that many schizophrenia sufferers truly do suffer. On the other hand, here where I live, there is a man who often dances on the sidewalk in a state of bliss. I suspect that he has some form of schizophrenia as well, but he is a happy innocent soul. Particularly schizophrenia appears to have a strong connection with gut health, by the way. But both people in my neighborhood, the woman with bipolar disorder and the man who dances on the pavement are looked
after, somehow, and they both live independently as far as I know. The woman with bipolar disorder usually goes out to get a newspaper every morning and reads it with a cup of coffee. She also enjoys a smoke every once in a while and does her shopping like everybody else. Caring after the Dutch young man with severe schizophrenia was much harder. His parents looked after him at first, then he went to a facility, but that became more and more problematic as well and eventually he moved in with his parents, until he passed away relatively young. The Dutch neighbor with bipolar disorder received permanent financial support and was not living in poverty. He seemed to manage well. He also had support in the form of someone who stopped by at certain intervals. My bipolar colleague is obviously very well looked after too, mostly in the form of regular appointments, the way other people see a dentist or podiatrist from time to time. Personality disorders are in a different ballpark. I understand that there are ten recognized personality disorders (paranoid, schizoid, schizotypal, narcissistic, antisocial, borderline, histrionic, avoidant, dependent, obsessive-compulsive, and a "not otherwise specified” category) that have just been trimmed down to five (antisocial/psychopathic, avoidant, borderline, obsessive-compulsive, and schizotypal). While some of these will be clearly identifiable (such as obsessive-compulsive), all can likely also easily be faked and whether you are assessed as having such a disorder has to do with who assesses you. As the descriptions of associated factors are vague, the determination of their presence or severity is subjective. It is easy to imagine that someone from a different culture is misdiagnosed.
Picture a person from Sicily versus a person from Hampshire. To the person from Sicily, the person from Hampshire may appear drugged or depressed, or maybe very tense, whereas the person from Sicily may be experienced as extremely agitated and as exhibiting pressured speech (which can be an indication of psychosis, so I understand) by the person from Hampshire. The way highly intelligent people speak can also come across as pressured to those who aren’t used to it. And even most of the Dutch talk much faster than most of the English. How can you tell who is unusually sad or introverted? How do you know whether someone is pathologically agitated or merely upset with good reason, or ebullient by nature? I don’t know much about personality disorders, but I do know that particularly antisocial personality disorders are in a different ballpark. People who are burdened with such a disorder don’t go around jumping off buildings because they think they can fly. They don’t run into train stations while swinging an axe either, though that may be what many people assume them to do. They are often highly intelligent and highly capable, but they see the world differently and reason differently. They draw different conclusions. In a way, they could be from a different culture. (Concepts like time, truth and honesty also vary by culture.) By the way, I suspect that my own dad had a borderline personality disorder with some dissociative tendencies as a result of something that happened in his early childhood. His older brothers did something to him, although I don’t know what, but as paradoxical as it may sound, he partly blamed me for it too. After all, I too was an eldest child. One Sunday
morning, while I was doing some household chores in Europe, I was listening to a Saturday night radio program broadcasted from Tampa Bay that usually played a lot of music. This time, there was a great deal of talking going on. Suddenly my ears pricked up and I thought “That’s about my dad!” so I turned up the volume. In that radio show, they were discussing borderline personality disorder and it sounded exactly like my dad was. This occurred fifteen to twenty-five years after I’d cut off contact with him. I had concluded that he had a strong deleterious not to say disastrous effect on me and my life whereas nothing I did or said made a difference to how he felt. As far as I know, I’ve never known anyone (else) with a borderline personality disorder. For several decades, though, I have had a loyal friend who turned out to have a narcissistic personality disorder. I wasn’t aware of it until recently. Yes, I had noticed a few odd things off and on over the years and there’d been quarrels, but hey, nobody’s perfect. I guess what I had learned without realizing it is that if you don't make a big fuss about manifestations of the condition, you keep the actual person separate from the disorder, the way you don't blame someone who needs kidney dialysis for needing dialysis either. My friend is highly intelligent, has a big heart and a terrific sense of humor, although I know that few people get to see more of her than that. Among many other things, I owe for the tip she gave me that helped clear my lungs when I had pneumonia (and which I have continued to apply to help me keep my lungs clear). It’s a veterinary technique called coupage.
Don’t get me wrong. It can be very challenging to deal with all the games and gaslighting that narcissists can engage in, but being aware of what is going on is half the work. Shrugging more often can help. Just consider that you deal differently with your children than you deal with your colleagues at work. We do not hold all people accountable to the same degree. Just like it is foolish to get angry at a blind person for not being able to see, it is often useless to get angry with someone because the person is unable to see the world in the same light as you. (The danger, of course, is that the friendship or relationship eventually gets hollowed out when nothing gets shared anymore to avoid triggering the narcissistic person’s sensitivities. I have no good recipe for how to avoid that emptiness, for how to avoid becoming a bottomless echo pit in a close relationship with a narcissist. Maybe it’s a matter of finding the right language. Verbal communication has its limitations.) Narcissistic personality disorder seems a tragic condition to have, but clearly, my experience with it is limited and I don’t know much about it. Perhaps the biggest giveaway is that narcissists seem incapable of joyously happy smiles. Funnily enough, this description currently fits me as well, so maybe I will think differently about this topic a few years down the line, when my smile has returned to my own face. (It’s a long story.) By the way, did you know that smiles, too, have cultural aspects? Smiling has different connotations in different cultures, but I hadn’t been aware of that at all until after my relocation to Britain. I first sensed it, and later read about it. Anyway, I had always vaguely thought that narcissists were very
vain and spent a lot of time in front of the mirror, as I had never had any reason to look into the topic, but I had heard about the Greek myth about the hunter Narcissus. The general public, on the other hand, primarily seems to equate the condition with boastful celebrities and CEOs. Once I did start to look into it, I found that people like my friend are mainly described as evil, or consumed by envy and out to destroy you. That was upsetting. Is it accurate? In a way it is and in a way it isn’t. The general advice seems to be to run like hell from people with narcissistic personality disorders. But where does that leave them if everyone were to do that? (Naturally, “running like hell” is fine when it merely translates into for example avoiding someone who isn’t part of your social life, such as a neighbor who often appears to be lying and drawing attention to himself of herself in a particular way. Stop engaging in conversation with the person and do not respond to any taunts thrown at you. That way, you may be able to avoid escalating flabbergasting clashes.) I suspect that the lack of support for people with personality disorders and other mental health conditions can sometimes lead to the tragic excesses the public sometimes hears about. With regard to personality disorders, there seems to be a common refusal to accept that they exist, hence a refusal to accept that the people who have them should not be blamed for having them. Yes, they often go hand in hand with highly capable intelligent minds, but these minds function very differently. The wiring is different and that is what the rest of us don’t seem to be able to grasp. We insist that they function the same way as we do, which is like demanding that a blind
person sees like the majority of us. Even a color-blind person doesn’t. Yet there is also a crazy fascination with and a lot of fearmongering about such disorders in a safely distanced manner (fiction in books and films), which enables us to say that these things only happen in movies when they happen in real life to someone else. It can also make us freak out when we encounter something in real life that resembles what we have seen in a movie or read in a book. That causes a gridlock. It leaves many people struggling on their own, often with everyone around them accusing them, vilifying them and disowning them or simply ignoring them. It probably causes a lot of anger and powerlessness that has the capability of completely spinning out of control. (Maybe it helps to picture a cornered, injured wild animal or an abused dog that a rescue team is trying to take to safety?) Mental health conditions, even when they are merely temporary just like physical conditions, tend to burden people with a lasting stigma. Why? Why is it still much more accepted to be in a hospital with appendicitis or meningitis than because of a suicide attempt or a psychotic episode? Why do the people at the Catholic chapel on the corner quickly close the door when they see someone approach who clearly has some type of permanent mental health condition as if it concerned a rowdy group of inebriated young men? It can help toward the acceptance of mental health conditions to translate them into visual information. Images. Show people a brain scan of the person in their surroundings who is “not
well in the head” and how it deviates from a normal brain scan. If the blood chemistry differs, show them that, in a colorful graph. The visualization of the condition is the “broken arm” that tells people that there really is a problem. It helps people see that it makes no sense to blame the person for the mental condition that he or she never asked for. It reveals that the person isn’t just “behaving badly all the time” and cannot simply “grow up”, “get over it”, “grow a spine”, “behave”, or whatever they would love the person in question to do. By way of exercise, picture yourself asking for help as a victim of stalking. Imagine you’re a middle-aged woman and you’ve been stalked anonymously for years. One day, you open your front door to go to the supermarket and you find the remains of your dead husband on your doorstep. He passed away years ago, but your stalker has dug him up. Say it all out loud, as if you were talking to a friend or colleague, telling them about what is going on in your life. Then picture yourself explaining what is happening to a police officer. Now imagine that you are also feeling very upset while you are trying to convey this information. How can other people tell whether you are mentally well or not? You will certainly sound as if you’ve lost your mind. You will very likely be assessed as the one with the mental health problem and if not, you may be told that you’ve mistaken the remains of the prey of a fox. This example comes from a real case that happened in Britain. The woman in question had a heart attack when she found her deceased husband’s remains. She was later sectioned (declared a danger to herself or others) and spent months on a psychiatric
ward as a result of the tremendous damage her sadistic stalker’s relentless targeting had done to her life. Consider this. Sadistic stalkers pick their targets because they perceive them as happy, content… and stable. Undoubtedly, many people in her surroundings did not believe the poor woman while all of that was going on and thought she was merely seeing ghosts, compounding her hardship. Living in a situation like that for years is immensely taxing. Incidentally, that particular stalker was trying to convey the message “What’s he got that I don’t have?” when he left the remains of the deceased in front of the woman’s house. Would you have thought that it signified that he wanted to kill you if that happened to you? That is actually what references stalkers make to death usually mean, apparently. Or maybe that is what they intentionally try to convey merely to mess with their target’s head. In Britain, 1 in 5 women gets stalked in her lifetime. Lorraine Sheridan is a psychologist (based at Curtin University in Australia) who conducted an analysis of stalking cases in Britain when she was still working at the University of Leicester in Britain. The majority of those cases featured stalking exes. Others undoubtedly concerned gentle souls with mental conditions that make it hard for them to relate in a normal way. I recall a friendly janitor in the U.S. who used to leave bars of chocolate and other small gifts on my bicycle while I was at work. Thankfully, he had a colleague who gently steered him away, but I can imagine that such situations can easily escalate into accusations of stalking. That then obviously can cause a lot of anger in the supposed stalker who was only trying to
communicate that he liked or perhaps simply appreciated someone in the only way that occurred to him. However, 12.9% of the cases in Sheridan’s study concerned socalled sadistic stalking, which is usually anonymous, and often highly debilitating for the target, who is typically perceived as a good person. It can go on for decades, even if the stalker is arrested and goes to prison, as this type of stalker operates with a network of helpers. I suspect that sadistic stalking can be linked to (antisocial) personality disorders, particularly narcissistic personality disorder. Another category of stalkers, namely delusional fixation stalking (15.3% of the cases in Sheridan’s study) can be related to other mental health conditions, such as borderline personality disorder and episodic schizophrenia. Individual cases can have overlap between stalking categories. Some of these stalkers appear to be desperately trying to “cure” others of mental health conditions those others don’t have. Others seem eager to prove that anyone can be driven around the bend. It makes ya wonder… In spite of Sheridan’s work with police, her study does not seem to have brought about a real improvement in how society deals with stalking cases. A stalker killed 19-year-old Shana Grice in Britain in 2016. (Police also failed Kent-based Molly McLaren later.) She had gone to police to report that she was very concerned about someone stalking her. After police officers found out that the young woman knew the stalker – he was a former boyfriend – they fined her for wasting police time. Police failed Shana Grice. One thing that her killer did was
provide text messages to the police that suggested that Shana wanted a relationship with him (although she had returned to her previous boyfriend). If police took those at face value, then that would have been incredibly naïve, technologically speaking. Text messages can easily be spoofed. Caller ID means nothing. Going to the police is the worst thing you can do if you have a stalker who is obsessed or potentially dangerous. It will seriously aggravate the situation because police officers are neither equipped for nor interested in resolving such a situation, certainly in Britain, so it is likely to infuriate as well as empower your stalker. Resolving stalking situations should become a specialization of psychology and psychiatry. Lay people have just as little idea as police officers about what to do and what to make of it when someone becomes the target of (a serious form of) stalking. Apparently, Shana’s killer was obsessed with her. He even broke into her home once to watch her sleep. He had said to her over the phone that he was “not right in the head” and perhaps needed to be “locked up or something”. People don’t say such things without good reason (and when anyone ever says something like this as a joke, it is clear to everyone that the person is merely joking). The obvious question is whether Shana’s killer had an undiagnosed personality disorder or other mental health condition and whether her murder could have been prevented if he had received proper care. Why was there no support for him when he needed it? But if there is almost no support for people who find themselves targets in such a situation, then there sure as hell is no support for the people with conditions that can make them
do such absurd things like dig up a stranger’s dead partner or break into a home to watch someone sleep. (Keep in mind that they have a much higher threshold to cross, too.) They never asked to have such a condition, but they have to live with it day in day out. Even if the condition is relatively mild (which it usually is, of course), that can still put a heavy burden on such a person. It is akin to letting someone who is paralyzed from the waist down or has a broken leg or arm (or the flu or hay fever), struggle on his or her own, without any form of support, splint or a wheelchair (or a few days off with plenty of hot soup or hay fever meds). We blame these people for their mental health conditions. We turn their backs on them. We may even let them wander the streets, which is what happened to the brother of Abigail Balfe who campaigned relentlessly to get him the assistance he needed and into supported accommodation. Unfortunately, most relatives aren’t as loyal as Abigail Balfe and many can’t afford to be. I am not exactly the most loyal person on the planet either (but I don’t have any relatives living on the streets as far as I know). Loyalty toward a mentally ill relative can have a high price. We can’t look after others well if we don’t also look after ourselves well. Sometimes, that means having to distance oneself from a relative, particularly when it becomes clear that nothing one does or says or refrains from has any positive effects on that relative (and perhaps particularly when that person is a parent or partner). It is easier to look after someone who has a broken arm or hip, or babysit someone’s kids when he or she is off to a hospital for dialysis.
Also, most of us point fingers and tell victims of childhood abuse to get over it, when the damage done to their personality makes that impossible in many cases, like some broken porcelain figurines will never be whole again. Some can be glued together fine with no cracks showing. Others are born with cracks beneath the surface. Regardless, they should have support available when they need it, but the emphasis is on supporting people with physical conditions. That is a form of discrimination. There is for example probably much more help for teenagers with cancer than for suicidal teenagers, and the latter can even be criminalized by police. But we don't blame someone who needs kidney dialysis or chemotherapy for needing dialysis or chemotherapy. On the other hand, we shouldn’t equate people with their conditions, whatever they are. Few people with cancer enjoy being equated with cancer as if they are nothing more besides cancer patients. Similarly, most people with personality disorders or other mental health conditions do not like being equated with their conditions and to be reminded of them constantly. There is a Zen saying that perhaps approaches this best for mental conditions. “Tell me what your original face is, from before your mother and father were born.” Separate the person from the condition. But do treat the condition, if that is required. Easy to say. Harder to practice.
Particularly narcissistic personality disorder seems to be a condition that we don’t know how to deal with yet. Apparently, some people are born with this condition, while others are nurtured into it by either excessive neglect or excessive pampering during early childhood. Narcissists seem to be people with such an intense craving for unconditional, exclusive love and acceptance and such a deep belief that they’re inadequate and despicable (on the inside) anchored to such a seemingly unshakeable belief in their own superiority and/or attractiveness (on the outside) for which they want recognition that they tend to throw tantrums when something happens that clashes with these needs. That contradiction can make it almost impossible not to offend someone who has this condition. That contradiction is also the reason why narcissists often lie, but don’t always perceive themselves as lying. The lies can be lies they have to tell themselves to uphold their views of themselves, lies they have no choice but to believe in, lies they honestly believe to be the truth. There is an internal disconnect between these two sides of which they are unaware and it means that they are unable to connect with or gauge their own emotions, so I understand. They are often torn apart by envy, the kind of envy that makes no sense, and that is only based on the sheer existence of someone else, someone who might potentially get in the way of unconditional, exclusive love and acceptance. Does it come from a fear that this third party might expose them as the despicable, inadequate humans that they secretly believe they are? Merely thinking about these strange contradictions is
mindboggling. It doesn’t help that narcissists also seem to believe that everyone else is as insecure as they are underneath the tough veneer, and also constantly scheming (the way they seem to have to do to keep their lives together), and at the same time are superior. The mirroring of Narcissus. That mirroring may work both ways. Treat (particularly these) people well and they’ll feel better about themselves. That way you may be able to create positive spirals instead of downward ones, or at least keep things at an even keel. This may be why people with such conditions seem to have a tendency to surround themselves with good, kind and forgiving people or people who admire them. It helps them be the best they can be. The rest of us may not have a good understanding of what makes them tick and how to deal with them, but is that sufficient reason for wanting to eliminate them from the planet? If a gene, allele or gene combination is associated with narcissistic personality disorder, we can test for this at birth and ensure that the person receives the support he or she deserves, from birth. That said, I suspect that narcissists wouldn’t mind at all if their disorder could be eliminated from the planet, and would love to have techniques like CRISPR applied instantly, but we’d have to ask narcissists and we would have to let them reply anonymously. Narcissists, people with a Jekyll & Hyde personality over which they have little control, do not need moral enhancement, however. All they seem to need is a way to have their internal dichotomy bridged so that a good balance is
achieved. I recall a conversation with my friend from years ago in which she said something that had no particular meaning for me at the time, but that I understand much better now. She was terribly distraught and talked about an unexplainable drive that she had, something that forced her to want to be perfect all the time in everything she did and what an immense strain that put on her. This was the first time that I heard that inner voice of hers speak clearly. I began to develop an intuitive feeling for her situation first, but still found it very hard to explain in words. It has something to do with being torn in two different directions all the time, I suppose. It reminds me of a spinning toy with two strings. You pull at both ends, in opposite directions, and the toy spins. When you are around other people, your strings probably get pulled almost nonstop if you have a narcissistic personality. Psychopaths, on the other hand, are often highly successful because they are not distracted by emotions. Psychopaths may be a normal part of human diversity, people on the far end of the full spectrum that has great compassion and extreme altruism on the other end. Psychopathy occurs in many different ways, however. Growing up in situations with extreme stress and violence such as war situations appears to contribute toward some of its worst manifestations. Insensitivity to serotonin, caused by (excessively) high levels of serotonin in the womb, can play a role too. Generally speaking, psychopaths seem to apply a coldheartened calculation of pluses of minuses, while assigning a higher value to benefits to themselves or certain goals than to
benefits to others. (Note the strong resemblance to utilitarian reasoning; see Chapter 3.) Should we really eliminate all psychopaths from life, if we can, just because we can, as bioethicist Julian Savulescu (Oxford University) appears to promote? If so, should we eliminate all of them if that is possible, or should they be allowed to come to live provided they will have an IQ upward of 120? I don’t think we should strive to eliminate psychopaths from the planet at all, not as a rule. The few handfuls of people with Brunner syndrome – which is caused by a rare mutation of the MAOA gene – may fall under my definition of lives not worth living, and this genetic condition would therefore be a good target for genetic repair treatments such as CRISPR. By the way, Julian, Brunner syndrome goes hand in hand with intellectual disability, so is unlikely to result in people making biological weapons of mass destruction in backyard sheds or the like. Many psychopaths actually provide good services to the communities in which they live, and most aren’t even aware that they are psychopaths. Some are excellent surgeons. Others make decisions in business or government. More than a few are university professors. They may not all be wildly popular, but who says that you need to win popularity contests to be allowed to live your life? Psychopaths often function fine and do no harm. They may break their own arms more often because they may engage in certain sports activities more often than the rest of us. Because they seem to see themselves as intellectually superior
and seek challenges, they may also excel in areas such as counterterrorism. It seems to me that these persons need occupations that fulfill their high mental requirements and honor their intellect, as well as challenges that keep them focused and provide the thrills they crave. They may be people who get bored very easily and maybe that’s particularly why and when they get into mischief and worse. Maybe they need adversaries of some kind. Some of them have great insight into their condition and are able to deflect their negative urges, put them to some good use. Their lack of understanding of emotions, however, can hamper them in those pursuits. Cooperation in teams with smart people who do understand emotions may offer a solution. The internet is adding new dimensions to their possibilities, however. Psychopaths (and narcissists) are now able to team up in a way that they’ve never been able to do before. I suspect that they often recognize each other online and if so, this means that they can gang up on targets if they want in a way that has never been possible before and is capable of destroying a target’s life much more profoundly than before. There has been research that indicates that there is a high level of psychopathy among internet trolls. And, indeed, would you go after the relatives of the recently deceased or of missing people merely to inflict extra hurt on them? Have you ever tried to provoke epileptic seizures, for the “lulz”? I believe that there is also a higher incidence of psychopathy among hackers. If you dive into YouTube videos from the various DefCons (major conferences), you’ll find lectures on how to con and manipulate people, for example. The rest of
the world mostly thinks of hackers in terms of technologyobsessed geeks, but a large part of what they do concerns social engineering. Many hackers see people as hackable systems. Trolls, in a way, hack people too. They exploit their vulnerabilities. One or more psychopaths wreaking havoc by wiping out all the computers in a hospital, attacking the electric grid, or getting into airline and flight control systems, that is probably a much more realistic danger than the backyard shed creation and ensuing distribution of biological weapons of mass destruction that Julian Savulescu keeps harping on about as if he’s describing villains in a James Bond movie. (You can listen to Savulescu on YouTube in various talks and interviews as well as in a photo shoot with a famous photographer.) All you need is electronic equipment, brainpower and a lack of conscience and enough drive, or motivation. It is also possible for hackers to isolate (groups of) people electronically. Consider the following. If the U.K. government can have porn on its computers, which it often does, those computers are a piece of cake to hackers. A problem with this challenge is that almost nobody realizes what hacking actually is. Nobody wants to think about it. If at all, it’s thought of like it is some kind of new plague or smallpox and treated as if people who understand it carry the disease too. They tend to get escorted off planes and so on, for example after they make remarks about the vulnerability of flight systems and airlines systems that others don't consider
funny. (Particularly if they also happen to be holding a book in their hands that isn't in a western language, of course.) It's easier to pretend that hacking does not occur, and that only other organizations' systems get hacked because one's own systems are secure. Even the Pentagon gets hacked, but everyone’s own systems are almost always perceived as safer than the Pentagon’s. Let’s face it, this does not spell much good news. The way for society to deal with that... is to work with hackers and psychopaths. (Many hackers already work very hard out of their own volition to keep the rest of us safe, accepting that most people are essentially completely clueless about IT.) Psychopaths see various kinds of vulnerabilities much sharper than non-psychopaths and seem particularly keen on intellectual challenges, including challenging each other. So you harness the potential of these groups of people! You don't shut it down. You let them use their remarkable brainpower and skill sets in their own emotionally unhampered way. You let them flourish in their own way without causing harm. Maybe that is naïve too, but I think that it beats demonizing people. It also beats asking them to take daily oxytocin pills, which is just as technologically or scientifically naïve as suggesting that hacking can be stopped by blocking a spoofed account on Facebook or changing one’s Yahoo password.
Confidentiality and privacy Many current discussions pay a great deal of attention to
confidentiality and identification, but if we establish support for everyone, no matter what condition someone has and accept this diversity, such concerns should eventually disappear. Fifty years ago, many subjects that we openly talk about today were still guarded secrets, never discussed. (My mother’s illness was kept secret too. In those days, if talked about at all, it was abbreviated to K, which is the first letter of the Dutch word for cancer.) Fifty years from now, social concerns that worry us today will have disappeared too. We’ll probably laugh about how silly and uptight we used to be and may have trouble understanding why we didn’t see yet that transparency would set us free and bring us a lot of good. Privacy is currently a rapidly disappearing (changing) concept anyway, so I think that we will slowly accept that the digital age comes with the loss of privacy in many ways. That does not have to be as dramatic as it sounds. Privacy is not only an evolving concept, it also has cultural angles. In daily life, privacy does not mean the same in Britain as it means in the Netherlands, for instance. The realization that people from different generations and from different cultures have slightly different views on what privacy is may add some perspective that will help us breathe easier. We should and probably will become more relaxed about the loss of privacy as we knew it and focus more on preventing and ameliorating potential negative consequences of that loss, if any. The bigger issue is not loss of privacy but abuse of personal
information. The more open information is, the more open any abuse of that information becomes and the harder it will be to abuse information illegally.
Role of medical profession The medical profession plays a major role in the stigmatization (disability creation) of persons with certain conditions, particularly those seen as mental health issues. In Britain, it is okay for a woman to say that she can bandage her own skin lesion and does not need to see a nurse who can do that for her. But if that same woman says that she can’t be present at a similar follow-up in the mental health realm, because she does not think she’ll need it and will be hundreds of miles away at the time anyway, her patient record is likely to state that she “refused” the follow-up sessions, with no further explanation. That’s a form of discrimination and it biases anyone who reads that record against that person. It suggests that she is an obstinate person who refuses to cooperate with those who claim to know better what is best for her. The use of the more neutral “declined” instead of “refused” would already be an improvement. The medical profession not only plays a major role in biases toward mental health patients versus physical health patients, it also is involved in the (forced) sterilization of men and women (see Chapter 9) as well as in for example the selection of (pre)embryos and support of pregnant women and couples.
Future needs and possibilities for non-mainstream people What I haven’t seen mentioned either yet in the bioethics discussions is that the future may hold currently unknown vital roles for the people the new eugenics may want to eliminate. Their brains may have capacities we currently aren’t aware of. We may develop a strong need for such qualities in the future. Watch the TED Talk by Temple Grandin (Colorado State University) too, about different kinds of minds, by the way. At the moment, we still use the written and spoken word to convey knowledge, for example. This is not the most effective mode of communication imaginable. What if it becomes possible to transfer images in our minds directly to the brains of others? Will the people we currently see as “less able” still be the “less able” ones then? (Picking up images from minds may be an ability that birds have. How would we know that they don’t?) Also among so-called normal humans, there is a lot of variation in how our brains work. Some people can do things like count to ten and talk to someone at the same time or write one thing and talk about something else at the same time, whereas others can’t. There is nothing wrong with that; it is just a part of our natural variation. When I happen to be writing something down, such as a message after a phone call, and someone else starts speaking to me, I can hear and understand what that person says to me, but I can’t say anything. So I’ll stick up a hand or nod – because
that I can do – to signal to the person that I’m actually listening but ask for a moment’s patience, so that I can finish the note and then address whatever the person said. I am sure that there are also people who can say “Give me a sec” in such circumstances. I can’t. Is one better than the other? And when I am feeling around in a drawer for something I cannot see, I often automatically close my eyes. My brain apparently decides that the visual input I receive at that point is far from helpful. Other people close their eyes when they are trying to recall something or are in deep thought. These things aren’t the same for everyone. Is there anything wrong with that? Do we need to fit a particular mold or pattern to be “good”? We need more tolerance for the wide range in human diversity. We need more and better education in this area. We need more support and empowerment. If the way our societies are set up hamper some persons, then eliminating those people isn’t the solution. The solution lies in dealing with the thresholds and hurdles we’ve created for ourselves. Ramps for wheelchair users are just the beginning. What’s more, wheelchairs will cease to exist in the future, when technology will make a lot more possible for the persons who are currently still forced to use a wheelchair. Several contemporary artists are playing with human diversity in their own way and what they do helps illustrate some of what I mean. Neil Harbisson sees colors as sounds because he is unable to see color naturally. He uses technology to transform colors into sounds. He’s actually enhanced himself
relative to other humans because he also detects UV and IR (which brings his abilities closer to those of birds). Stelarc has a third ear on his arm and Tim Cannon has a magnet implanted in his left ring finger. These types of physically and mentally different people also meet with some resistance. Harbisson has been thrown out of churches and department stores after he became an “eyeborg”. Some people – they are called synesthetes – have senses that are not separated but work together. They for example see different words that are printed in black and white in reality as if they were printed in different colors or they hear them as a form of music (pitch). They too are a part of our rich diversity. Clearly, technological progress not only makes it possible to stop certain persons from existing, it also opens up the possibility for more variation in the future, thankfully. Technology will also increasingly allow us to “enhance” individuals in many other ways. We will, for example, be able to create humans with skin in fluorescent colors (fish genes), which may help overcome the issues we still have with naturally occurring human skin tones. Wouldn’t it be great if we could pick a skin tone every morning like we select a shirt or sweater? It will also enable mentally and physically different humans to make better use of their own characteristic abilities. Why should such possibilities be kept from some people by preventing their existence because we insist on considering them “disabled” or “diminished” in some way?
To sum it up At this point, intentionally producing children with certain traits and deselecting other traits can be a harmful practice, regardless of whether the practice intends to produce “diminished” or “enhanced” humans. Distinguishing between these two can be considered discrimination in itself. All states of being have advantages and disadvantages. A helpful exercise within this context is to ask yourself whether it is better to be a giraffe or an elephant, a bird or a fish, a cat or a dog. Is it better to be nocturnal, or not? Cats are. Dogs aren’t. Some cats have dog-like personalities and some dogs behave cat-like. Why would some humans be “better” humans than others? Why would some lives be better than those of others? When we talk about equality and equal opportunities, opponents often reject this as a ridiculous concept. The short story “Harrison Bergeron” by Kurt Vonnegut illustrates very well what they mean. It paints a world in which the sports practice of handicapping is applied to humans. The size and nature of the added handicap clearly reveals the characteristics of the person underneath the mask and costume he or she is forced to wear. But that is not what the concept of “equal opportunities” is about! It is about not discriminating between different people who can do something equally well. It is about not making things more difficult for some people than for others. It is about not holding some people back and encouraging others, about allowing everyone room to thrive, to flourish! It is about
enablement and empowerment! It is about allowing Nicolas Joncour to go to school instead of sticking him in a psychiatric hospital. He isn’t mentally ill. His brain works fine, but it works differently. That’s all. Not being allowed to use your own magnificent brain and be locked up instead is enough to drive most people around the bend. Imagine yourself in his position...
“Some of the best lessons we ever learn are learned from past mistakes. The error of the past is the wisdom and success of the future.” – Dale Turner
5. Technological mistakes
Various science writers, philosophers and bioethicists feel that we are often intimidated by technological progress or distrust it. They say that we have an innate trust in everything that we consider natural, by contrast, and that we feel only the natural is good. They, on the other hand, may have blind faith in technological progress, while the widespread adoption of notably digital technology indicates that maybe we aren’t really that terribly afraid of the unnatural. To the contrary, maybe our innate trust in progress is too naive. Sure, science and technology have brought us a lot of good, but we have also made many errors in the past. I think that we – as humans collectively, and particularly those at the forefront of these developments – have a propensity for pushing ahead in our belief that we’re doing something good and are sometimes so convinced that we’re doing something good that we overlook the potential for bad. And when we think of bad, maybe we worry about the possible abuse of good technology for bad purposes and not so much about what could be bad about the good use of the new possibilities. We are currently at the brink of the 6th mass extinction in the
history of the earth, with the big difference that this one is entirely anthropogenic. Created by humans. It is the result of many decisions we’ve made in the past, mostly based on new technological possibilities of which we were unable to foresee the negative consequences. When looking back, it is astonishing that we never seem to have asked questions that are so blatantly obvious now. The clearest example is probably that of insecticides. Why did none of the people who made these decisions foresee that the use of insecticides and other biocides (“life killers”) would also affect birds, bees and amphibians, and now humans too? The latter happens directly through effects such as decreasing male fertility or possible effects on mood and indirectly because our own habitat is now slowly becoming unfit for life and we need bees for many of our crops. All over the world, wildlife populations are in decline. In the last 60 years, the populations of seabirds for example have suffered a catastrophic decline of 230 million birds. Giraffes are disappearing. So are elephants, many ape and monkey species, not to mention large cats. We have a genuine amphibian crisis going on, with two major diseases sweeping the planet (helped along by the pet trade). That phrase – amphibian crisis – may have made you laugh. But frogs are an indicator species, as are salamanders and other amphibians. The skin of amphibians is highly permeable., which makes them very sensitive to environmental conditions, including pollution. Because frogs and salamanders live in water and on land, how well these creatures are doing tells us how suitable our planet still is as a habitat for the human
species. You know that birds – canaries – were used in coal mines in the past to indicate the presence of lethal gas quantities. Humans knew they were in danger and had to get out of the mine as soon as possible if the birds started dying. These birds were used as indicators of the risk to human lives. Something similar is now happening with regard to the entire planet. The indicator species – like amphibians – are indicating that the planet is no longer as suitable for humans as it used to be. Is the human species in danger? Most people shrug. So what. It won’t affect them personally, and they’re right about that. It will affect later generations. In the summer of 2015, I conducted a small global survey among companies that carry the name of an amphibian. I admit that I was taken aback by the response from one company that calls itself a global innovation firm, probably the largest company in my survey. It is a TED partner (as in “TED - Ideas worth spreading”), a member of the Global Growth Company community of the World Economic Forum and also cooperates with UNICEF. The person who responded was the least interested in the topic of all respondents and initially even wrote back with hostility. On its website, this company states that it is working "with the world's leading companies, helping them to create and bring to market meaningful products, services, and experiences" and says it is "fanatical about improving the world". Much smaller companies in my little survey responded with a much greater sense of responsibility and either explained how
they sourced some of their materials or were much more humble about their lack of knowledge about the amphibian crisis and its context. To contrast this with, there is another global high-end consultancy that not only proudly carries a very specific amphibian as its logo, but chose that logo on purpose, to reflect that caring for the environment is a vital part of its mission. This company is not a TED partner. It simply spreads the message through its work and it also funds some research into the now endangered amphibian that it carries as its logo. From which of these two types of corporate (or governmental) environments do you want the decisions about the new eugenics to come? Who do you want to decide what your children’s and grandchildren’s future will be like? We all have choices to make, right now. We have options. Who do you vote for? The men and women who believe that there are lesser and higher human beings or the men and women who believe in responsibility, inclusivity and accountability? You also vote with your wallet (where you shop, and how you shop), and with your voice (how you talk at the breakfast and dinner table and over drinks). Insecticides are not the only cause of these mass declines. It’s merely an example of how we got things wrong in the past. Decades ago, an analytic chemistry professor I was working with at the time already told me about the environmental effects of fabric softener. If I wanted to do something for the environment, she said, not using fabric softener was a very good choice.
I can’t leave out fossil fuels. Their use is not only ruining our climate but our oceans as well. Also, the use of cars causes a lot of fine dust in the air and is making many people ill. Ask affected inhabitants of cities with smog problems like Beijing, London and Paris how they feel about the progress achieved by the automotive industry. Unfortunately, many people still see environmental concerns as silly. Reticence with regard to eugenics is sometimes treated this way too. In his 2001 article “Procreative beneficence: Why we should select the best children”, Julian Savulescu (then working in Australia but now based at Oxford University in Britain) mentioned “desires” that according to him are “based on irrational fears (e.g., about interfering with nature or playing God)” as one reason why “couples do not want to use or obtain available information about genes which will affect wellbeing”. He essentially argued that we should see children like products, as he compared them to boxes on Wheel of Fortune. Technological advances have already made us cross that dividing line between mainly leaving things up to nature and mainly controlling issues of life and death ourselves a long time ago. We are now in an era in which doctors are increasingly often described as “playing God” when they do not do everything in their power to prolong a baby or an adult’s life artificially, no matter how high the cost to the individual in question. In his article, Savulescu gave the example of an embryo “with a predisposition to developing asthma.” He wants to persuade us
to deselect that embryo, if we can, but apparently doesn’t expect medicine and technology to develop much better ways of dealing with asthma than we currently have. He didn’t mention the effects of wall-to-wall carpeting or the impact of anthropogenic air pollution on patients with respiratory diseases either, nor did he point out one of the biggest problems for people with a predisposition for developing asthma, namely black molds in (cheap rental) homes. Sure, one way of dealing with the damage our technological progress and our lack of concern for renters wreak is to engineer the human race so that it becomes immune to everything we throw at it. (I don’t think that that is possible, by the way. Even dead material responds to its surroundings, although diamonds and most plastics are fairly resistant.) More importantly, when our bodies respond to something in our environment, this can be a signal that something in that environment is not good for our health. Black molds do a lot more than cause an asthmatic response, for instance. Disabling that response is probably not a good idea. Interestingly, some allergic/asthmatic responses appear to result from the lungs’ response mechanism to invasion by lungworms. Lungworms occur in patients seen at doctor’s practices in London, for example. I wonder how Savulescu feels about hay fever, or period pain. Until I started taking the pill, I was often doubled over with pain at the start of my period, which would usually last about seven days. My period forced me to skip my secondary school’s final exam for German and take the reexamination after everybody else had already graduated. It had nothing to do with
nerves; I was good at languages and achieved a grade of 9 out of 10 for German. I started menstruating when I was 13, stopped when I was 48. If I use a monthly cycle of which I was less well on 3 to 5 days, I end up with having been born with a predisposition for 35 times 12 times 3 to 5 or 1,260 to 2,100 days on which I was going to be less functional. Periods can cause anemia and many women die in childbirth or because of botched abortions. These deaths are due to the fact that women have a uterus. If I apply Savulescu’s reasoning for embryos with a predisposition for asthma to female embryos. I would certainly have to make deselection of female embryos an established practice. Incidentally, Italy has just introduced days off for women when they have their periods. This is a wonderful example of a society acknowledging diversity and making room for it. (Italy also has a relatively small gender pay gap.) Yes, periods can be debilitating. Women did not ask to have periods. They were born that way. Some women, on the other hand, are actually at their best when they’re having their periods. Our hormone balances don’t all tick exactly the same way. That too is part of human diversity. Anyway, there are plenty of examples of how technology got it wrong in the past. I have summarized a few hereafter.
Thalidomide Take the infamous example of thalidomide, a sedative that was prescribed to suppress the nausea that tends to accompany pregnancy. It was believed safe. It caused limb deformations as
well as malformations of the cardiovascular, intestinal and urinary systems of the affected babies and was taken off the market in the early 1960s. (I could have been a thalidomide baby.) Thalidomide was marketed under various trade names. In humans, a small dose is enough to have these teratogenic effects, whereas it takes much larger quantities before it causes damage to the offspring of other species. Fortunately, it was later able to gain a new reputation, as notably an anticancer drug, but in its original role, it affected over 10,000 fetuses. Those who’ve been around long enough may remember photos of the resulting babies in newspaper articles.
DDT and other pesticides DDT (1,1,1-trichloro-2,2-bis(4-chlorophenyl)ethane, or dichlorodiphenyltrichloroethane), aldrin, dieldrin, and lindane are examples of pesticides that were introduced and later banned. DDT causes nerve damage and affects the hormoneproducing systems of many animals, among other things lowering their fertility. DDT was initially lauded as a miracle pesticide and insecticide, and a Nobel Prize was awarded in connection with it, but there had been concerns about it from the beginning. It was the environmentalist and marine biologist Rachel Carson’s work that eventually led to a ban on DDT and other pesticides in the United States. Among other things, DDT almost eradicated the bald eagle in the United States after it had already been hunted and killed relentlessly on the grounds of myths about the damage the bird did to agriculture. Today, DDT is still used to control the spreading of malaria in
some areas. At the time of writing of this book, groups of people all over the world are fighting to get other harmful pesticides banned, such as glyphosate and chlorpyrifos. That isn’t because they’re afraid of progress. It’s because they use their brains and aren’t narrow-sighted. They are following in Rachel Carson’s footsteps, and we know now that she was right. In 1980, methyl isocyanate from a pesticide plant in Bhopal, India accidentally killed more than 2000 people.
PCBs Polychlorinated biphenyls (PCBs) are very stable compounds that were used as plasticizers, coolants, and in many other ways. These toxic compounds accumulate particularly in the fatty tissues of animals, affecting for example seabirds. Countries began banning them in the 1970s.
CFCs CFCs (chlorofluorocarbons) and the bromine-based halons were used as solvents and coolants, as well as in the production of various (packaging) foams, among other things. They seemed harmless until we discovered that they were destroying the stratospheric ozone layer that protects us against getting too much UV from the sun and limits the incidence of skin cancer.
WE NEED TO TALK ABOUT THIS
Dioxins Agent Orange and Seveso are perhaps the best-known names in connection with dioxins. The dioxins consist of two groups of chemicals, the PCDDs and the PCDFs (polychlorinated dioxins and polychlorinated dibenzofurans). Dioxins form when for instance PVC burns incompletely in a waste incinerator, but this is not the only way by which dioxins can end up in the environment. Dioxins are also connected with herbicides, for example. The formulation Agent Orange was used in warfare to cause trees and shrubs to lose their leaves and contained dioxin proper (TCDD). It affected many people who handled it. TCDD was also released in massive quantities during an industrial incident in the Italian town of Seveso in 1976. Dioxins have multiple negative effects on human health, such as on the immune system, the endocrine system and reproductive functions. At least one dioxin is classified as a known human carcinogen.
DES DES babies may be a term many people my age may be familiar with as it potentially affected us. DES (diethylstilbestrol) was given to pregnant women to prevent early labor and miscarriages. It did not prevent such complications, but did cause tumors and other effects, none of which were desirable, particularly for children exposed to DES in the uterus.
Antibiotics The effects of the overuse of antibiotics (another version of “life killers”) are well known. As microorganisms increasingly develop resistance to antibiotics (also because they end up in sewage plants via our toilets), antibiotics now make it increasingly harder to treat infections in people who desperately need them. That’s because we have been prescribing them in great numbers to people who don’t need them and feeding them to exploited livestock as a prophylactic measure, thereby encouraging the development of resistant strains.
Chloroform, bromoform and other compounds Chloroform and bromoform were habitually used as for example solvents until their toxicity became clear. They are carcinogenic and toxic to the liver. The octane booster MTBE, which replaced methylene chloride, had problems too. Many of the compounds used in the chemical cleaning sector suffered from similar toxicity difficulties.
Flame retardants Brominated flame retardants ended up everywhere in the environment, even in the tissues of polar bears in the Arctic, and also had to be phased out.
PTFE Both the household use and production of fluorine-based non-
stick coatings (PTFE, polytetrafluoroethylene, Teflon) for kitchenware and as heat-resistant coatings in for example space heaters, heat lamps and hairdryers are problematic as well. While PTFE certainly has its usefulness, for example in laboratories and hospital settings, and also as a lubricant, both its manufacture and its household use raise questions. Accidental overheating of non-stick cookware can result in the release of several extremely toxic compounds. It has led to the agonizing deaths of many pet birds, and PTFE overheating has also killed large numbers of poultry. The respiratory systems of birds are much more sensitive than those of mammals, but the compounds released during first heating or overheating of PTFE affect human health as well. Problem chemicals are also involved in the manufacture of PTFE. Perfluorooctanoic acid (PFAO), also known as C8, dissolves well in water and does not decay in any way. It is now globally present in the air and in seawater. In the Netherlands, discharges by the Chemours plant in Dordrecht led to increased PFOA concentrations in the Merwede river and in the groundwater along its banks. In the U.S., a former DuPont plant in West Virginia released more than 1.7 million pounds of C8 into the region's water, soil and air between 1951 and 2003. C8 was phased out after a class-action lawsuit that alleged that it causes cancer. Chemours now makes a new compound called GenX instead, for which safety thresholds have yet to be established. Regular water treatment methods don’t remove it from drinking water. GenX may be safer than C8, but it is also alleged to have caused tumors and reproductive problems in lab animals. In some locations, GenX has already freely been
released into the environment for decades as a result of a flaw in legislation. Here are two questions that I would like to see answered: 1.
What have non-stick coatings on cookware actually brought us? I haven’t used non-stick pots and pans in years and that works just fine. Heat lamps and space heaters seem to function fine without these coatings too. (And why are there no automatic temperature switches on stovetops? Overheating of for example an electric stovetop accidentally left on has caused plenty of small fires.)
Why is there no sticker on products that indicates whether or not they contain PTFE? I have a toaster that may contain the stuff. If I use something that harbors a potential health risk, whether for me, my pets or my family members, shouldn’t I know about it? Shouldn’t I have a choice as to whether or not I buy or use PTFE?
The answers lie in commercial interests. In practice, they often weigh heavier than our health. The manufacturers of these coatings – initially intended for use in space flight – have known for a long time that there are risks associated with the manufacturing as well as with the use. (IVF is also a big commercial market that continues to grow rapidly. Pharmaceutics is big business. Whose interests will be at the foreground of new developments in human procreation?)
Smoking You may also ponder the fact that in 1960, 58% of American men and 36% of American women were smokers. In those days, smoking four packets of cigarettes per day was considered fine (but Big Tobacco knew better). Four years later, we slowly started reversing that notion and tobacco products now all carry health warnings. Smoking remained cool for a long time in spite of the clear health risks and in the late 1970s, you were still often considered a klutz if you didn’t smoke.
Plastics Plastic is taking up more and more space in the oceans and we’ll soon have more plastic than fish in the oceans. We have microplastics in our blood. Honey has microplastics in it too, and microplastics have also been found in bottled water, drinking water and beer. Where does a large portion of those microplastics come from? Our clothes and carpets. Another major part is derived from larger objects. Look at the albatrosses whose bellies are filled with plastic bottle caps, at remote locations. Look at all the shorelines littered with so many kinds of plastic. Yes, we are now starting to develop sugar-based biodegradable plastic bottles that are much stronger than plastic bottles and new biobased fibers, but isn’t it a little late for that? Why did we never ask what would happen with our plastic waste after we discarded our disposable and durable plastic products? Did we really never consider that? Never?
Clearly, we humans are neither omniscient nor clairvoyant.
Nanoparticles We are now using nanoparticles on a significant scale – your toothpaste may contain them – yet we don’t have any technologies that can separate them from waste streams. Have you ever asked yourself what these tiny particles do to our organs? Speaking of toothpaste, I now use baking soda instead, and I choose a brand that comes packaged in paper and cardboard. It’s considerably cheaper than toothpaste, brings down my plastic waste output a tiny little bit, and also seems to make my teeth much less sensitive to low temperatures. For dental cleaning, it works just as well, also according to dentists. One of my colleagues probably won’t thank me for saying this, but I am more worried about nanoparticles than about the new eugenics. I suspect that nanoparticles have the potential to wipe us out because I see them as potentially affecting biology like sand thrown into an engine or machinery. Biology may be able to cope with them fine, but I wonder at what cost to each organism. We also don’t know how they may affect microorganisms, many of which we depend on (those in our gut, for instance, but also in various stages of food production). We have very little if any control over nanoparticles and they get into everything, including our organs. They offer great possibilities in medicine, however. Thankfully, I am not up to date on nanoparticles, so I keep telling myself that my knowledge is probably simply hopelessly outdated.
Dams We also used to see dams as useful by definition. They created water reservoirs and we sometimes used the water to drive turbines in power plants. But top water management experts no longer consider dams particularly good because dams block sediment flow. China, Germany and the Netherlands are examples of countries that are experiencing challenges because of dams. Today’s approach to river management is a much more natural one (“building with nature”). Ask the Dutch, whose lowland delta country with rivers like the Rhine and Meuse discharging into a sea has made them intimately familiar with marine and fluvial flooding, which has put them at the forefront of water management insights. And what about the villagers who were forced out of their homes to make way for dammed reservoirs and the wildlife displaced in the process?
Electronic technology In The Guardian on 8 February 2018, David Smith reported about a plea made at a conference in Washington to companies like Facebook. “The leaders of Facebook,” it said, “should consider children when they make decisions that could harm millions of young people hooked on the social network.” Silicon Valley alumni, former tech workers turned whistleblowers, including people like Roger McNamee (an early investor in Facebook, now part of the Center for Humane Technology), and lobbyists are issuing warnings about “potential links between tech addiction and sleep disruption, poor academic performance, anxiety, depression, obesity, social
isolation and suicide”. James Steyer of Common Sense Media organized the meeting. He promotes safe technology and media for children, while criticizing companies like Google, Twitter and Facebook. In Davos in January 2018, Marc Benioff of Salesforce, “called for Facebook to be regulated like a cigarette company because of the addictive and harmful properties of social media.”
Water, food, space litter, sugar, breast implants Why do we still use drinking water to flush our toilets? Why are we only now willing to concede that myopia (near-sightedness) may have something to do with forcing kids to focus predominantly on short distances (writing, reading, and now typing and staring at mobile gadgets), an idea dismissed as utterly ridiculous not that long ago? Why do the households in any western country buy excessive quantities of food that they throw out one or two weeks later to the tune of billions of pounds, euros or dollars per year? And did you see that recent image showing the gigantic amount of space litter that that now circles the planet? It’s crazy! Need I go on? Need I mention the various types of dangerous breast implants we’ve had, for example? Toxic dental fillings? The neurotoxin monosodium glutamate (E621)? (Oh, that lovely feeling as if you’ve been run over by a big truck the day before.) Sugar, and some kids already needing liver transplants as a result of too much sugar in their diets? The cases of industrial aluminum, chromium and other kinds of metal poisoning and the Erin Brokoviches of the world who expose
them? There are many more examples of how we got things wrong in the past. My point is that we humans clearly really aren’t as smart as we think we are (and we are not very good at predicting what we don’t know yet). Maybe the strongest indicator of that is that we humans haven’t actually been on the planet very long yet but have already done more damage to our own habitat than any other species. Birds, for example, have roamed the planet much longer than we have. But birds don’t care about money. Humans appear to have a strong tendency to let money dictate what happens. Commercial interests steamroller all over us until damage – harm – becomes clear and the voices of protest grow louder. I wish that weren’t true. I like progress. I like advance. I like cool new stuff. It’s exciting what we can do. Until we start looking at the other side of progress. Apparently, we have about two decades in which we can still turn the overall decline of our habitat around in terms of biodiversity. Two decades. Twenty years. That’s the time that passed between my birth and my first real job, in Amsterdam. I am not afraid of progress and I am not afraid of chemicals either. I have not only handled Teflon lab ware, but also bromoform, boiling hot concentrated acids, radioactive materials and even osmium tetroxide in the lab and none of that has given me sleepless nights. But we shouldn’t be producing massive numbers of toxins, and releasing them into the environment, expecting them to have no ill effects on our lives whatsoever. And so on and so forth.
“Life is not worth living if I cannot have pasta or bread again.” – Monica Seles
6. Lives not worth living
Let’s get into matters that many people will find boring and feel tempted to skip. The tone in this chapter and in the next one is very different. Bear with me, though, and don’t fast forward instantly. Read at least the bold phrases. I want to know if it is possible to come up with universally applicable guidelines for the new eugenics that respect diversity and prevent harm. They would have to be amended eventually, of course, but we need some principles to guide us forward. To end up with generally applicable regulations that don’t collapse at the first challenge, we first need to come up with generally applicable definitions. Within the context of consumer eugenics used in the creation of offspring, we must act primarily in the interest of the child and prevent any harm to the child (and that includes the resulting person). But what constitutes harm within this context?
In principle, allowing someone to be created does not harm that person.
This is an existing view that I agree with. It is better to be alive than not to exist at all, generally speaking. But if we accept that for example a hearing child and a deaf child are equally valuable, we run into the problem that if a hearing child is injured in such a way that the child loses his or her hearing, we do consider that harm. This also applies for adults and the laws in most countries agree with this view too. That forces us to ask ourselves whether it constitutes harm to be born without hearing (or to be born with a condition that will eventually render you deaf).
We consider it harm when someone else changes us against our wishes.
If we explore that, it becomes clear that we consider it harm when someone else changes us against our wishes, particularly with regard to physical changes. (We seem to be less clear on psychological changes. We don’t start lawsuits against bad schools and teachers when they have changed children in a way that good schools and teachers don’t – even though the former can also mar a child for life.) We don’t generally think that a surgeon harms a person if that person decides to undergo cosmetic surgery for purely esthetic reasons, but would consider it harm if this were to happen against the person’s wishes. (There can of course also be harm if the surgeon is professionally negligent in the sense of using
the wrong sutures or other errors, but that is not the context we’re talking about here.) So the crux appears to be that we should not change another person (physically) if that change isn’t that person’s explicit wish. (The right to integrity of the body also plays a role here.) A child who doesn’t exist yet cannot express or have wishes yet, and that is precisely why we should assume that any change we would carry out to that child is not based on that child’s wishes. That is a potentially problematic conclusion. Should this also include PGD, as PGD itself can do damage? No, because actions to detect and identify conditions or diseases are excluded from what constitutes harm (as they are – or should be – applied to prevent harm). Techniques like PGD would also help detect conditions that lead to lives not worth living. Genetic changes accomplished by techniques such as CRISPR should be included (that is, considered harm), unless done for similar reasons as in utero surgery and surgeries like appendectomies are done, namely to enable lives and/or treat developing health problems. (We can and likely will have to change this later, whether in fifty years or in the next century.) Generally speaking, however, until a child reaches majority, the parents are required to make decisions for the child and in the child’s best interest. Is there a potential conflict here? We need to explore this further.
It is acceptable to most people – though not everyone, mostly on religious grounds – that parents ensure that medical intervention takes place when this is required to save the child’s life. If a healthy child contracts a disease or suffers an injury that without medical intervention would result in a so-called diminishment, the latter also clearly counts as a change that would take place against the child’s wishes whereas the medical treatment would be according to its wishes. No child wants to have appendicitis, for example, and not be treated for it. So there is no conflict here. Yes, a child that wants its ears pierced may ask for this as a result of peer pressure, but it is still a wish that comes from the child. It is akin to an adult asking for cosmetic surgery for purely aesthetic reasons. That too is the result of some form of societal pressure. No one should force a child to have its ears pierced; that would be harm. Also, a parent can stop a child from having his or her ears pierced on the basis of the argument that the child (minor) is too young to be able to make such decisions and the procedure is no medical necessity. There is no conflict here either. So it looks like this definition of harm holds up and would not get in the way of parental duties to existing children. Changes implemented not explicitly according to our wishes must be seen as occurring against our wishes, and constitute harm. (Note that this would also apply to male circumcision and female genital mutilation.)
Any changes carried out to a child who doesn’t exist yet must be assumed to be against that child’s explicit wishes, in principle, and constitute harm, unless that change would enable a life that would not be worth living or would not be able to exist without that change.
Now we have a basis that that we can work with.
We cause harm if we create a child who will have a life not worth living if we are able to prevent it.
A child born into such a life without the parents’ prior knowledge of the kind of life the child will have is not harmed by the parents because the parents weren’t in a position to prevent this life on the basis of any knowledge they had. Note that this definition also implies that if we are able to remedy the situation, for example through the use of CRISPR, we should. But what is a life not worth living? Most people probably see “a life not worth living” in terms of physical pain, and of increasingly terrible suffering that will only lead to the child’s death. The parents and other persons in the child’s surroundings may gain something from the experience and possibly become more compassionate as a result, but the child gains absolutely nothing from the experience. To the contrary, it only suffers.
We can’t leave “a life not worth living” undefined, however. It would leave the door open for people acting on the basis of personal opinions or feelings that have little to do with the resulting child’s welfare. It could also mean that every case must be looked at individually, which would soon cease to be practical when genetic selection and manipulation become the rule. So we need a definition that we can apply to every case, in principle. (I can envision a future in which the guideline I am about to propose with will be completely superfluous, when techniques like CRISPR will be used to avoid all occurrence of lives not worth living. Then too, we can amend this guideline because good and bad are relative and when the worst – namely lives not worth living – has been eliminated, the next “bad” thing will become the worst.)
Every human being has the right to a life in dignity.
The principle of humanity, namely that every human being has the right to a life in dignity (see 2003 working paper by Buchanan-Smith or the course “Humanitarian response to conflict and disaster” by the Harvard Humanitarian Initiative and Harvard Center for Health and Human Rights), offers a way to arrive at a good definition of “a life not worth living”. We probably agree on this principle of humanity worldwide, no matter where we are from or what our religious background is. This is the first step toward a definition of “a life not worth living”.
But… what is dignity? As it turns out, it is not possible to decide what constitutes dignity for someone else. We can only define it for ourselves. Consider that nudity equals a lack of dignity for many people, but not at all for many other people. Being too ill to eat and use the bathroom without assistance can constitute an unbearable lack of dignity for one person but be acceptable to someone else. Being unable to breathe and needing a ventilator may be where the latter person draws the line, while someone else still finds that acceptable but would like to avoid being in a coma or some other form of vegetative state for, say, more than a month. These physical forms of loss of dignity are not the only ones imaginable. Alzheimer’s, for example, can cause a loss of dignity too, even though it has its basis in physical developments in the brain. Almost all of us would likely want to avoid getting Alzheimer’s disease. However, one reason for excessive alcohol consumption is the loss of awareness it results in and you can probably see drunkenness as akin to temporary Alzheimer’s. Clearly, dignity is a personal concept. It is the result of cultural and religious influences and one’s personal preferences and experiences. The examples I just gave are western and contemporary, but that does not matter. The principle of dignity itself, however, will very likely hold for a long time, even if our views change of what is acceptable and what not. This takes us to the next step. To be able to decide whether we
are living a life in dignity or not, we have to be able to make decisions. So now we have the following: •
To allow a human being to come to life does not constitute harm to that human being.
To allow a human being to come to life constitutes harm if that human being will have a life not worth living, if this was known in advance and if it was possible to prevent that.
To implement physical changes (including genetic changes) against a person’s explicit wishes constitutes harm.
As unborn children are not yet able to express wishes, any changes (including genetic changes) carried out to unborn children must be seen as being against the explicit wishes of those children, with the exception of a change that would enable the child to come to life (meaning that without the change, the pre-embryo or embryo would not be viable) (or heal the way we would try to heal appendicitis).
All humans have a right to a life with dignity (the principle of humanity).
It is not possible to define dignity for another person.
To be able to decide whether a person has life with dignity, that person has to be able to make decisions, with or without explicit assistance.
A person gains the right to make his or her own decisions
at majority (full age, coming of age). In many countries, this is the age of 18 years. This is therefore a logical age to attach to this guideline (and attaching a fixed age limit to my non-discrimination guideline for embryos helps rule out arbitrariness). See also Chapter 8, under “Euthanasia and older minors”. With the above, we can create a workable definition of “a life not worth living”.
A life not worth living is a life that has at least a 95% probability of not making it to the age of 18 or that has at least a 95% probability of the person not being able to make his or her own decisions at that age, even with assistance.
I feel that it is necessary to point out that this does not represent my personal preference. I balk against the idea of declaring that someone who passes away at age 4 or 9 or 15 does not have a life worth living. I came up with this definition because it seems to work very well in practice and that means that it contains little risk of arbitrariness or corruption. This definition also does appear to diminish harm as much as possible while not promoting discrimination or prejudice, hence respecting diversity. It holds up for severe psychopathy as well. If a gene, allele or genetic combination is identified that predicts a 95% likelihood that someone will engage in arson, torture of animals and so on
without there being a cure or treatment to prevent this from happening, then such persons would also fall within the category of persons who are unable to make their own decisions at the age of majority. They would make their decisions on the basis of harm to others and seek to harm, instead of avoiding it. This means that such a person would have a life not worth living, clearly also for his or her own sake. This would likely only pertain to rare cases, in practice. The ability to make decisions is useless without being able to communicate them. Appropriate assistance should be able to achieve communication, when needed, and we have to be diligent in this respect. Persons who require assistance with the actual decision-making should have that assistance. Most of us enjoy some kind of assistance in our decision-making, regardless of whether we are aware of it.
Identity, legal persons and rights Some bioethicists strongly object to the treatment of preembryos and embryos (as well as fetuses) as if they aren’t humans. When does a person begin and when do his or her rights begin? Within the context of liability of the parents in cases of intentional “diminishment” (selection of pre-embryos with a certain trait such as deafness), some scholars have mentioned identity. That raises very complicated questions for which there are no answers. At what point can we say that we have changed someone’s identity? At what point does someone’s identity begin? Nobody knows. Identity is clearly also partly or maybe mostly formed after birth, and so that
discussion only seems to lead further astray instead of providing more clarity.
But both that approach and mine run into the same problem: Can someone who does not exist yet – a pre-embryo or even a not yet existing embryo – be seen as a person, and therefore assigned rights? If not, then how can there be harm if, for example, we were to carry out genetic changes to an embryo, under the assumption that this would be against the future child’s wishes? (I mean this within the context of the law, not morally speaking.) If yes, then how can we legally allow any form of abortion of embryos of up to 24 weeks and not consider it murder? We therefore seem to have a need for a new international category of legal personality. If a business can be a person and a river and a mountain in New Zealand can be legal persons, then surely it is also possible to have a separate category of legal personality for pre-embryos and embryos or fetuses up to 24 weeks. (An embryo is generally considered a fetus when it is at least 10 weeks old, so I understand, but in this book, I have mostly used the currently often used time limit of 24 weeks, the point up to which abortion is commonly allowed, although this point is not set in stone.) Cell clusters in those stages would not have a legal right to life yet (so this would therefore not clash with existing abortion rights), but they should have the right not be discriminated against on the basis of the characteristics of the eventually resulting person (child) unless those characteristics would give the child a life not worth living. This safeguards basic human rights concepts like respect and dignity as well as the principle of unconditional love as the basis for good parenthood and inclusive solidarity in society.
This may be a stretch for many and take some getting used to. (For the time being, they probably should also have the right not be interfered with in a way that would constitute harm if similar actions were carried out on a newborn. We wouldn’t want to apply CRISPR to a newborn so that its eye color would match the home furnishings or one’s own better, so we shouldn’t do it to gametes or pre-embryos either.) A pre-embryo that does not yet exist, of course, does not have any rights and cannot be harmed. You could perceive sperm and egg selection on the basis of their characteristics as a human rights violation, but the problem with that is that a human who never comes into existence doesn’t have any rights. Here too, however, we can apply human rights ideas as prevailing principles. Why not? We can apply the principle of non-discrimination to sperm and egg selection. Sperm and egg selection should take place “blindfolded” (which is what I also argue for abortion). Lives not worth living should be the only exceptions and conditions such as genetic deafness or dwarfism do not fall into that category of lives not worth living.
“I know we can't abolish prejudice through laws, but we can set up guidelines for our actions by legislation.” – Belva Lockwood
7. Guidelines for eugenics
As discussed in preceding sections of this book, enhancing or designing our offspring does not provide guarantees for our offspring’s wellbeing or even competitiveness at this point (with the limited knowledge we currently have). And as I have also made clear in the previous chapters, I believe that for the time being, we should restrict ourselves, for the following reasons. •
At this point in time, we are unable to predict the effects of allowing an unbridled practice of personal or mandatory eugenics on the human species. We have made many mistakes in the past when we blindly applied what we thought of as technological advances without being able to see their future deleterious effects.
Perceived impairments are often hindrances created by society.
Human variations that some people may currently think of as less valuable (less competitive or less worth having around) may become much more valuable in the future.
We can’t assess what we don’t know yet. •
There is a potential for harm to the resulting designer child if the child does not meet its parents’ expectations, for whatever reasons.
Here is what I propose for the practices of personal (and mandatory) eugenics:
Only allow selection that selects against children who have at least a 95% probability of not making it to their 18th birthday or who have at least a 95% probability of not being able to make their own decisions at that age, with or without assistance.
I am aware that some countries already have an accepted practice that goes beyond what I propose. The medical profession can give us the statistical probabilities for whether or not a child will be able to make its own decisions at the age of 18 (age of majority, coming of age), given it has a certain genetic condition. There is no such thing as 100% certainty in most of these cases. All we need is a good enough certainty, something that we can work with (also in the courts). We can work this out in such a way that we don’t need to be concerned about the validity of the statistics (bias). We could, for example, ask all countries to supply their individual assessments and use the average. Gut feelings against this type of reasoning can be very strong,
such as the impression that this way of thinking diminishes the value of some lives, no matter how short. I have those feelings too. This is not necessarily a problem, however. Parents who feel very strongly about this are unlikely to select against such a baby and are also highly unlikely to sue a state to get what they want. The courts only need to know how to deal with cases that are brought before them. Cases that do not show up in the courts solve themselves. I also have some doubts about how people will determine whether someone is able to make his or her own decisions. If you consider that for a very long time, we’ve thought that other animals had no cognitive abilities and were not able to feel emotions, hence were not able to make conscious decisions either… At this point in time, I don’t think we should criminalize the decision to accept a life, but this may of course change in the future. By that, I mean that we may have to decide that an embryo or pre-embryo that will result in a baby with LeschNyhan syndrome must not be implanted, and that embryos or fetuses that test positive for such conditions must be aborted. The implantation of for example an embryo that would lead to genetic deafness would therefore be allowed and would not be a condition that we would test for as a basis for deselection. I think we should carry out much more extensive tests at birth (many of which we currently don’t do yet, also for certain infections), so that we can treat children from birth and not for example be forced to diagnose them at 1, 2 or 5 years old when a lack of a certain protein has already done a lot of damage to the child’s body (and mind). Testing at birth, if possible, should
also be carried out for personality disorders and other conditions that are considered to be of a mental nature, and then followed up by the provision of support just like we also support persons with physical conditions. If the regulations state that discriminatory selection of eggs, sperm and pre-embryos is not allowed unless it would prevent a life not worth living as I have defined here, we would have a great deal more clarity than we seem to have now. The principle of what constitutes a life not worth living as I have defined it here seems to hold up well in practice. Some examples are Tay-Sachs disease, Lesch-Nyhan syndrome, Leigh syndrome, types of severe combined immunodeficiency (SCID) and (some cases of) mitochondrial DNA depletion syndrome. (Keep in mind that this should also go hand in hand with applying techniques like CRISPR first to enable these lives and eradicate lives not worth living.) From what I’ve written in this booklet, it automatically follows that mitochondrial replacement therapy (MRT) – colloquially known as the creation of three-parent babies – should be allowed (technical and practical issues aside) because it would enable the creation of lives that wouldn’t be possible without MRT. (I feel that it is not my place to tell a family unable to create offspring without ART to adopt an orphan.) This may change in the future, possibly leading to more snowbabies. As we cannot possibly know long-term effects of the application of such techniques, MRT should only be used as a last resort. Britain and Mexico are examples of countries that allow the clinical application of MRT.
An exercise To get an idea of the current practice, let’s take a look at what the U.K.’s Human Fertilisation and Embryology Authority (HFEA) does. It uses a growing list that currently contains about 400 conditions that pre-embryos can be tested against, but this means that couples must use IVF. In 2005, the HFEA issued the consultation “Choices & Boundaries: Should people be able to select embryos free from an inherited susceptibility to cancer?” “We want to hear the views of patients, carers and representatives of affected families, staff in treatment centres, disability groups, parliamentarians, academics and the wider public about the use of PGD for these types of conditions,” the Chair of HFEA stated in the introduction. That consultation contained the following questions (see next page). If you didn’t take part in it, how would you have answered these questions? Do you think that embryos who have a high breast cancer probability should not be allowed to develop into babies and grow into adults? Why, or why not? Do we have the right to withhold life from such an embryo? What about the embryo that would be allowed to be born instead if the embryo with the high breast cancer chance is discarded? Should that embryo be given to other parents, perhaps? In December 2017, a few days before Christmas, an American woman gave birth to a baby whose embryo was frozen in 1992. She felt that that baby would be as good as any other baby, even though it is not genetically related to her. (Such children are called snowbabies.) •
Question 1: We are interested to find out how you feel about using PGD to test for lower penetrance conditions such as inherited breast cancer. To help put your views
about this in context, it is important to understand how you feel about PGD for fully penetrant conditions such as cystic fibrosis or haemophilia. Do you agree with the use of PGD in general. For example, for fully penetrant conditions that are present in the child? •
Question 2: The HFEA guidance to PGD centres states that PGD should only be available where there is significant risk of a serious genetic condition. Given the lower penetrance, later age of onset and potential treatability of inherited cancer conditions, do you consider them to be serious genetic conditions?
Question 3: The HFEA guidance to PGD centres states that PGD should only be available where there is significant risk of a serious genetic condition. Does the penetrance of the condition affect whether or not you consider it to confer a significant risk? In your opinion what would be the lowest penetrance – in percentage terms – that would confer significant risk?
Question 4: The HFEA guidance to PGD centres states that the views of the people seeking treatment should be taken into account when considering whether to offer PGD. There needs to be a balance between the views of those people who would seek to use PGD to avoid passing on a condition and the views of wider society that may have ethical concerns about them doing so. In your opinion, how much emphasis should be placed on the views of those people seeking treatment?
Question 5: The HFEA guidance to PGD centres states
that the use of PGD should be consistent with current practice in prenatal diagnosis. Do you agree, with respect to lower-penetrance conditions, that the availability of PGD should be determined by current practice in prenatal diagnosis? •
Question 6: The HFEA wants to know where you feel the boundaries for the use of PGD lie. Considering penetrance, age of onset and treatability, what type of condition do you think should never be tested for in embryos using PGD?
The Scottish Council on Human Bioethics spoke out very clearly. Among other things, it said the following: “Given that many respected organisations, and various national legislations, consider the early embryo to be due full protection as a human being, the SCHB regrets that U.K. legislation regards the early embryo as so readily dispensable.” It also wrote: “the practice of PGD is fundamentally flawed as it fails to recognise the true nature of, and hence undervalues, human embryos. Following the creation of the embryo, when the genetic composition of the individual is determined, the development of this embryo is a continuous process right through to adulthood. Any attempt to demarcate a point in this process, before which an embryo should be considered a person, is arbitrary. In the absence of clear evidence to the contrary, the precautionary principle dictates that even the earliest
embryo should be accorded full protection as a human being.” On 21 January 2013, HFEA responded to the question whether HFEA had, prior to 2008, received a PGD application to select in favor of a disability. The answer was negative (F-2013-00009 - PGD applications in favour of disability). I believe that the advent of artificial wombs (uteruses) will provide a way out of the dilemma that currently still pitches so many people and institutions against each other based on the opposed views they have on the rights of embryos. When abortion ceases to be required or desirable in certain circumstances as offspring is created in labs and grown in artificial wombs, procreation becomes a chosen and parenting perhaps an assigned privilege, today’s reasons to discard embryos will have disappeared. It will be possible much sooner before it will become mainstream, however. On Twitter, Hank Greely (Stanford) said that it will likely take 50 to 100 years. I think it may begin to happen sooner.
Implications for wrongful conception, wrongful birth and wrongful life cases Three kinds of lawsuits are particularly relevant for what I propose. Wrongful conception and pregnancy, wrongful birth, and wrongful life cases are currently all based on the idea of negligence on the part of labs, hospitals or medical professionals. Wrongful pregnancy or wrongful conception cases imply that
the parents who bring such a case didn’t want a child. Any child. Think of unsuccessful voluntary sterilization as an example. This does not clash with what I propose. There is no element of discrimination here. Wrongful birth cases are lawsuits by parents who have had a child with a significant disability or impairment. These cases can have an element of discrimination. These are cases against, for example, doctors who should have informed the parents about a medical condition in the (pre)embryo or fetus, claiming that in that event, the parents would have opted for abortion. Usually, the parents claim damages due to psychological upset and financial damages related to extra costs involved in caring for the child. In practice, these claims usually contain an element of medical malpractice (negligence), an element of the need to find financing for a child’s care or both. As Ronen Perry pointed out in his 2008 paper, in these cases (as well as in wrongful life claims), the medical professionals (or labs) involved tend to have provided reassurances, rather than having for example amputated the wrong leg or, as happened in Britain recently, having amputated breasts that did not need to be removed. Of course, one of the problems of medical professionals is that the public wants to receive a 100% guarantee from them, which is impossible. That, however, usually isn’t at the heart of the matter here. Rather than having provided reassurances too lavishly, labs or medical professionals tend to have “messed up” in these cases. It is understandable that parents may end up feeling badly wronged, and it is also understandable that parents seek redress through the courts rather than through the medical regulatory
authorities. However, there is also always the question how these parents would have responded if the condition of their child had been the result of a traffic accident or a fall down the stairs at the age of 1. In 2014, Mpaate Owagage published a clear analysis of the developments with regard to wrongful life cases. “A wrongful life claim”, he wrote, “is one brought for or on behalf of a usually extremely disabled plaintiff who claims recompense on the basis that but for the defendant’s negligence, they would not have existed at all.” When courts do award damages, these cases essentially become wrongful birth cases, except that the damages are awarded to the claimant (plaintiff) and not to the claimant’s parent(s), thereby essentially safeguarding the claimant’s care. Ivo Giesen analyzed the ins and outs in an article published in 2012 and held that “most notably the cultural background and/or the legal policy reasons within a certain tort law/medical liability law system” decide the issue in practice. Wrongful life cases are problematic. They are started by or on behalf of a child or resulting adult. They tend to hinge on three factors. The first one is the question whether the defendant had a duty of care toward the claimant. If so, the next question is whether this duty had been breached by the defendant and third, whether this resulted in demonstrable damage for the claimant (for which damages may be awarded). There are two different types of wrongful life cases, as well as two different legal approaches (see article by Owagage), but these two do not fully overlap. The difference in the cases rests on the principle of harm as I have identified it in this book,
namely the occurrence of a physical change that can easily be assumed to occur against a person’s will. In cases in which the child has for example Tay-Sachs disease or any other genetic condition, the child has this condition irrespective of what a physician, hospital or lab did. Nobody caused this condition. The condition is not the result of an action (other than the creation of the zygote from which the child developed). (This will change in the future when a duty may develop to carry out techniques like CRISPR on such an embryo, but in the reverse way.) So it cannot be said that the defendant caused any damage to the claimant. This becomes muddled when we consider the creation of a zygote in the lab, but in that case, why not sue the parents too, as they are primarily responsible for the child’s existence? But even for such cases, the world seems to be growing toward the consensus that to be alive does not constitute damage in itself. In cases in which the child’s mother for example had rubella during early pregnancy, however, physical changes did occur. These changes would not have occurred if rubella had not been present. At first, this seems significant, but in these cases too, all logic leads back to one overriding question, namely whether the child would have been better off if it had not existed. This could have allowed a different child to exist that would not have been affected by, for example, rubella, but this is irrelevant. But in these cases, the claimants “do not contend that the defendant caused the deformity”, Owagage pointed out in his analysis. The claimants pose that the defendant was negligent in making information available to the parents.
To understand the dilemma, it is helpful to compare the situation with that of a five-year-old child being hit in traffic by a drunk driver. Is the driver’s liability greater when the child ends up paralyzed relative to when the child dies? Can the child (or the parents) sue the driver because the driver did not kill the child, but paralyzed the child instead? No. (It is hard to find an exact parallel among cases with five-yearolds, with similar relationships between professionals, child and parents as in wrongful life cases. That said, there is a duty of care toward the child on the side of the driver, and road traffic accidents too are mainly negligence cases. So the comparison seems a valuable exercise.) Is a child better off when it falls down the stairs and dies than when it falls down the stairs and becomes a paraplegic? Now consider the case in which both parents are blind and deaf and have just moved to a different neighborhood. Can the professional who sold them the house be held negligent if he or she has failed to inform the parents that a busy road runs past the property if the child subsequently walks into traffic and gets hit by a car? The real estate professional was in possession of vital information that the parents did not have. Had they had that information, the parents might have had a better gate installed, so that the accident would not have occurred that affected the life of the child. But would the child (or the parents) sue the real estate professional because the child didn’t die? Such a hypothetical case seems very relevant with respect to the wrongful life scenario, particularly if the real estate professional
provided a statement in writing that the house was sound, whereas someone made photos at the time that clearly show that it wasn’t. (We have to ignore that there may be an element of ill will in this example.) If a house has a brick chimney that is about to fall off, the real estate agent fails to mention this to the blind parents, and their child is injured by the falling bricks from the chimney, that would be like a health professional withholding information from a pregnant woman as a result of which the fetus is affected by rubella. This child, however, would not sue the real estate professional because it is still alive, but the child could bring an action for the damage done by the falling chimney. Then it begins to look like the distinction between the two different kinds of wrongful life cases is important. It also becomes clear that being alive in itself is clearly not considered “damage” as the child would not take the driver or real estate professional to court because it is still alive. It then becomes clear that some wrongful life cases do seem to have a real basis, whereas others don’t. In the cases of genetic conditions, when the mother claims that she would have terminated the pregnancy had she had the correct information, the child cannot claim that it would have been better to be dead (with the exception of a life “not worth living”). If you want to draw a parallel with non-existing versus existing or a different child existing instead, you could consider the fact that one child may get hit by a car while a child standing at a distance of 1 meter does not. Someone who gets hit by a car
cannot claim that if he or she had stood in another person’s position, the car might not have hit anyone. Someone who does not get hit by the car cannot bring a lawsuit against the driver, claiming that the driver hit the wrong person. Who gets hit by a car or not, that is almost always a similarly philosophical question as occurs when courts are asked to consider wrongful life cases involving genetic conditions. It’s almost like curved spacetime. It is impossible to know whether the car might have swerved or spun out of control differently if the person had stood in a different position or if the sun had been shining or the sun had not been shining. In wrongful life cases in which the mother contracted rubella, it actually makes more sense for the child to sue the mother than the physician, but not for the fact that the child or resulting person exists but for the fact that a physical change was caused against the child’s explicit will. This, however, is currently not a reasonable course of action. A mother has no control over whether someone who for example happens to be on the same train happens to infect her with rubella or not. A possible exception could be when the mother knew she had rubella, and then deliberately became pregnant. A different exception would be when a lab, hospital or medical profession for example has advised a mother that she does not have rubella (or is immune to rubella), after which she then goes ahead and becomes pregnant almost instantly, after which the fetus is affected by rubella after all. There can also be cases in which the mother, for example, uses medication and is told that it is safe, should she become pregnant. Such a pregnancy
could have been prevented, so the negligence did actually lead to the “damage” in such cases. Talk about obliging mothers not to smoke, not to use any drugs and not to consume any alcohol during a pregnancy, and criminalizing breaches of such a duty does crop up from time to time. (Gradin v Gradin was a case in Michigan, in which a child sued his mother for having taken drugs during the pregnancy, but the mother was unaware that she was pregnant.) Lawsuits of a child against the mother for negligence during the pregnancy are not allowed in many jurisdictions. In Britain, the Congenital Disabilities Civil Liabilities Act 1976 covers it (makes it impossible), for example. It is generally thought that the relationship between a mother and her unborn child is so special that to make the mother liable for anything that happens to the fetus would infringe on her rights as an autonomous person. Negligence claims for careless driving with the child in utero have on occasion been upheld, but seem to be covered by motor insurance, in practice. Other than that, these cases are just are controversial as wrongful life claims, as to hold a mother liable would essentially stop women from leading their lives while pregnant. Here too, the cases center around the need to finance care for the resulting children; see for example the British case CP (A Child) v First-Tier Tribunal (Criminal Injuries Compensation) & Ors. So far, in wrongful life cases in which courts awarded damages, the essence of the claim is usually wrongful birth, with the difference that the award is made to the child instead of to the
parent(s). This can help safeguard the child’s care in case the parents die or separate. Questions such as about the parent’s right to an informed choice are wrongful birth, not wrongful life considerations. These cases are often clearly not only linked with the topic of medical malpractice, but also with any nation’s duty to assist its citizens. That is often the real motivation for wrongful life (and wrongful birth) lawsuits. Perhaps this problem should be addressed through class actions, where possible. In France, the Perruche case led to new legislation (in 2005) that ensures financial support for families in the event of the disabilities of children, albeit only toward covering basic needs. Britain, for example, was found to be “blatantly discriminatory” against certain groups of disabled or chronically ill citizens by the High Court in December 2017, affecting 1.6 million people but likely benefiting up to 220,000 people in back payments, unfortunately possibly taking several years. The British government had already been informed similarly by a tribunal, but then rewrote the law to avoid having to follow up on that outcome. This entire discussion also seems to force us to have a discussion about the rights of embryos and fetuses again (see Chapter 8). Does a fetus have a right to life or not? Does a fetus have the same rights as a five-year-old child? Does a fetus have a right not to be harmed? Does a fetus or embryo have the right not to be discriminated against? Can a fetus have a right to be killed? What does the law say when someone kills a pregnant woman
in such a way that the child dies too? Is this one homicide or are these two homicides? Different jurisdictions deal differently with this question, but a common view appears to be that killing a fetus that is viable outside the womb constitutes fetal homicide. The right to abortion is also often tied to this viability question (and this is about to become muddled, as Glenn Cohen of Harvard has pointed out, with the advent of artificial wombs). Generally speaking, we do not seem to assign the full set of human rights to fetuses as a prevailing view appears to be that if the mother’s life is endangered by the pregnancy, ending the pregnancy is permissible. This is certainly not true in all countries, however. In some countries, such as El Salvador, there are currently problems with the criminalization of women who have had a miscarriage or stillbirth because these women are suspected or accused of having caused the miscarriage or death of the fetus. What, however, about children who end up with a life not worth living if this could have been prevented? If I follow my own definitions, such children would have a cause of action in wrongful life cases, as in such cases, life itself could be considered “damage”. The “immoral” quality of this conclusion implies that we have a moral duty to apply CRISPR toward the remediation of the related conditions. There should be standardized provision of support, including counseling after the birth of the child, if the child turns out to be a non-mainstream child that requires extra support. Ideally, all parents should receive whatever level of support they need.
(As I’ve mentioned, I think we’ll see a shift in professions in the future that will enable this, for example, considering the immense support males have had in the past, from their spouses, which allowed them to be fully dedicated to their work to a degree that most women still don’t have.) Many countries already have support like this in place. If you picture parents having to lift up a child all the time and someone needing to be around all the time, you can quickly see that such parents deserve practical and psychological support, not in the least for the child’s sake. Such parents require lifting equipment and common sense says that they also need to able to take the occasional evening off and the occasional vacation in spite of needing to provide the physical care for their child, for instance. In many cases, they would likely require a dedicated carer who is familiar with the child and the circumstances, instead of having to face a new carer every time. (As you can probably tell, I have no friends or acquaintances with a physically different non-mainstream child.) The concept of wrongful life connects with what I had in mind when I wrote that ideally, there must be a coupling with euthanasia legislation (in Chapter 8). If we allow a child to come into the world because the person will be able to make his or her own decision upon reaching minority, then it is only fair that we also allow such a person the right to euthanasia if the person decides that his or her life isn’t worth living. (Keep in mind that even if a person feels that his or her life isn’t worth living in the present moment, the hope that this will change in the future, for whatever reason, is usually enough to keep someone from exercising a right to euthanasia.) This is
also linked to the already mentioned moral obligation to use techniques like CRISPR first to address conditions that currently lead to lives “not worth living”. The literature listed at the back of this book contains enough examples, such as the case of Curlender v. Bio-Science Laboratories in the U.S. This concerned a normally conceived child with Tay-Sachs disease, with a life not worth living according to the definition that I propose. The child’s parents had undergone blood testing with the specific purpose of assessing whether their offspring was likely to have this condition. Apparently, the lab was somehow negligent in how the blood tests were conducted. Turpin v. Sortini et al. was a very different case that came before the U.S. courts. The Turpins’ first daughter had been examined and tested and incorrectly declared of normal hearing, whereas she was actually completely deaf as the result of a genetic condition. The Turpins then had a second daughter who had the same condition. They stated that had they known about their first child’s hereditary deafness, they wouldn’t have had the second child. According to the reasoning I present in this essay, it would have been okay for the parents to decide not to have any further children at all because that cannot called discriminatory. If the parents tested for the condition in an embryo or fetus and found it present, however, then this should not be reason to deselect the child as the child would have a life worth living. To decide differently would be discrimination. To seek damages for emotional distress suffered by these
parents (which the Turpins did, among other things), because their child was deaf is also a form of discrimination. A high-IQ child would demand a similar level of care. And who is to say that a hearing child with a normal IQ would require less care? Would the parents have sought damages for emotional distress caused by the fact that they unexpectedly had a child with a high IQ? In Germany, wrongful life claims are unconstitutional, as such claims would imply that the life of a disabled person is less valuable than that of a non-disabled one. The judiciaries in England and Wales, Ontario, and Australia mostly feel the same way. The Netherlands, on the other hand, has had the case of Kelly Molenaar. This case concerned a nine-year-old girl who was born with a serious chromosomal condition, as a result of which she appears to be in constant pain. I think it is fair to see particularly pain as a real impairment as opposed to impairments resulting from hindrances created by society. The child has other problems as well, and for example had several heart surgeries. At age two-and-a-half, she had already been admitted to hospital nine times for incessant crying alone, and this was believed to be caused by pain. The chromosomal condition Kelly has runs in the family, as a cousin of the father had the same condition and the mother had already had two miscarriages. The medical profession did not follow up on that information, even though the mother had made it available. No family history was taken and there was no consultation with genetics experts. The child’s condition was therefore detected too late.
The Court of Appeal in The Hague refused to consider a handicap “damage”. However, not only were the parents awarded costs of care and upbringing until the child’s 21st birthday, and costs of psychiatric care for the mother after the birth, the court also made the child a party to the case. The case was referred to the Supreme Court (on points of law), which upheld the Court’s of Appeal’s finding. Kelly was awarded compensation for emotional damage, which would not have occurred if the medical professionals had done their job properly. The court stressed that it had based its damages on the fact that the medical profession had made serious mistakes, not on Kelly’s existence as such. After this case, there was a call to ban wrongful life cases in the Netherlands, but no change in the law appears to have come from that. It remains a very difficult topic. In the case of Kelly, one can argue that Kelly’s pain could have been prevented and that this is what the Dutch courts mainly based their judgments on. This child is suffering, objectively seen. France has had the already mentioned successful wrongful life claim of Nicholas Perruche. This concerned a boy born to a mother who contracted rubella during her pregnancy after one of her other children became ill with rubella. In spite of two lab tests and symptoms, the mother was informed that she didn’t have rubella and she continued the pregnancy. The French boy’s parents brought proceedings on behalf of the boy, when he was 6.5 years old. Apparently, he has a heart condition, and is deaf and blind, and he may have other neurological conditions. The family first went to court in 1988 and was awarded approximately $13,000 (for wrongful birth). The parents, however, also felt that Nicholas himself had been
harmed by the laboratory and the physician. Nicholas was awarded damages four times, which was reversed on appeal every time until the case made it to the Cour de Cassation. In this case too, the medical profession made serious mistakes, but the crux of this case appears to have been financial support for its care and in this case, the award to Nicholas was for the handicaps, in contrast with the Kelly Molenaar case. France did later (2002) ban wrongful life cases, but it also created a law (2005) that arranges basic care for children like Nicholas Perruche. I do not have enough information to be able to assess whether the cases of Kelly and Nicholas concerned lives worth living, according to my definition. It does certainly appear to be the case for Kelly, but the situation of Nicholas is much less clear and I am not convinced that his life is not worth living. The cases of Kelly Molenaar and Nicholas Perruche make clear that not only can there be major differences between individual cases, they often have an element of punishment. This is for clear professional negligence (medical malpractice), similar to mistakes like amputating the wrong leg or failing to diagnose cancer that could have been cured if it had been treated instead of misdiagnosed. I think that we have to deal with this separately, not tie it to the lives of the children, however, while nations should step up in the provision of care. Parents should not be forced to go to court to secure care for their child, if that child requires more care than the average child. Parents should not have to deal with that immense stress. And children (even if only theoretically, considering that the knowledge may remain out of reach of the mental capacity of these children)
should never be burdened with the knowledge that their parents felt that they should not have been born.
Caring for children who are different In spite of what I say about nations having to provide care, I probably sound blissfully unaware of the mental (emotional, psychological, whatever you want to call it) burden children can put on families. The fact remains that some families handle this better than others and none of my wishful thinking is going to change this. (This may be a particularly strong reason for turning parenting into a profession eventually.) Here is a comparison that may be helpful. It concerns other species. If you’ve ever suffered extreme poverty and foraged in the wild to survive, then you may have realized how much we have in common with other species. Well, most pets are looked after very well, but not all are, even in spite of the best intentions, at times. It is sometimes said that particularly parrots are like special-needs children, requiring constant attention and stimulation. In practice, many households simply are not able to accommodate the needs of parrots. In such households, these parrots often become depressed and ill as result. They also often get dumped. This happens with cats, dogs, horses and other animals too, but the case of parrots displays the strongest parallel. This reveals the other side of the non-discrimination dilemma and explains why many bioethics experts feel that the decision to not have or abort a non-mainstream baby should be left to the parents. When parenting becomes a profession, maybe we
can assign some children to people on the far side of the altruistic spectrum, while people on the other side of the spectrum will be able to indulge in the intellectual stimuli they seem to crave. I would like to see that happen. It’s not true that all women want to have top careers, just as it isn’t true that all women want to be mothers. Similarly, many men would love to have a caring profession instead of being locked into a highpressure or simply boring career. This undoubtedly also goes for many people who are currently out of work and in receipt of financial support from the state. Why not use state funds to support the development of new caring professions?
Standardization of compensation and support (care) But we are not living in that distant utopia yet and what we have now is a clear need for standard testing for a wide range of conditions and illnesses at birth (including infections and genetics), for the simple reason that it will allow us to provide much better care and support, enabling the children to thrive. If we did this, we would know that babies like Charlie Gard have a problem when they are born, and we can respond to it much better, instead of allowing their conditions to take the lead, while we follow. Still too often, we read about mothers who knew that something was wrong with their child much earlier than the medical profession was willing to accept that and who had to fight to get the doctors to listen, sometimes for years, precious time during which the health problem escalated. An example is the mother of Alfie in Britain, who was very likely already born
with a neuroblastoma. So perhaps all newborns should also undergo imaging scans, so that irregularities such as tumors can be spotted as well. (This too is wishful thinking on my side, but it is high time to start shifting money from fat bonuses and excessive salaries into caring for the quality of all human lives. If we want to do this, we can.) Parents should therefore be allowed to sue for what would be essentially professional negligence or medical malpractice within this framework, on behalf of children, if a condition is not diagnosed at birth, but was present at birth. I believe that the costs of psychological counseling and other forms of support for the parents should be part of these damages and should be standardized in terms of amounts. That means that forms of emotional distress etc. no longer have to be – and no longer should be – addressed via special damages. This also takes care of the problem of how to assess such damages, and how to award damages to seemingly down-to-earth parents who cry their tears in the dark versus awarding damages to parents who appear easily upset, which is less a measure of suffering than of cultural background and upbringing. I don’t think that this can be seen as discrimination (providing support for parents with non-mainstream children, also known as respite care), just as providing sanitary napkins and tampons to a woman but not to a man is not discrimination, but rather giving the person what she needs on biological grounds. Providing a certain level of support to all parents might also help avoid stigmatization of some kinds of support.
“We all feel a compelling need to watch stories, to tell stories ... to discuss the things that tell each one of us that we are not alone in the world.” – Shonda Rhimes
The Groningen Protocol I believe that we would need to complement such a restrictive (non-discriminatory) eugenics practice as I propose in this book with matching euthanasia legislation. (For the sake of simplicity, I am considering all forms of euthanasia including physician-assisted suicide euthanasia.) If we allow someone to come into the world – particularly if that person would have passed away naturally if we hadn’t interfered – and that person considers his or her life not worth living as an older child or adult, we must also allow that person to act on that belief. That is only fair. Moreover, I believe that this, too, is part of giving someone the right to live his or her life in dignity. Euthanasia is a controversial idea, even without concerns of discrimination and coercion. What has started to intrigue me is how some people can see no problem with stopping people from entering life, yet have a huge problem with enabling
people to go gently into the night at the end of their lives instead of after dreadful suffering. Where does our resistance to the concept of euthanasia come from? It appears to be mainly rooted in religion. Certain religious beliefs dictate that there is a god who gave us our lives and that consequently, we don’t own our own lives and do not have the right to end our own lives. Other animals too, however, commit suicide (and some probably can be seen as carrying out euthanasia when they target a terminally ill group member). Take pigeons, for example. Pigeons have high cognitive abilities and can do things like learning to distinguish between music or art by different composers or painters. I doubt that they believe in a god, though. When pigeons know that they have a serious condition that they won’t recover from and that makes it impossible to escape from predators, they sometimes deliberately choose to commit suicide by car in busy traffic. Most pigeons, if they can still fly away, choose to retreat to a remote attic and await death there, often surrounded by the remains of other pigeons who preceded them. So maybe all we humans need to do to relax our concerns about euthanasia is to protect people from coercion. (Oh, how easy to say.) We therefore also need to make the crucial distinction between euthanasia for newborns, euthanasia for young children, and euthanasia for older children and adults because of the power imbalance that is involved. I (personally) find it hard to ensure that there isn’t the slightest coercion (though in practice, there doesn’t seem to be a problem).
On the internet, you can sometimes run into a loud roar of protest against Dutch people “killing” their babies, “after-birth abortion”, and something called the Groningen Protocol. Like me, you may have wondered what that is about. Groningen is an old city in the northern part of the Netherlands, the country I hail from. It has a large, highly respected university, which was founded in 1614, and an academic hospital. In the Netherlands, suicide is not a crime. Assisted suicide and euthanasia are, although the practice of euthanasia for competent persons of age 16 and above became legally possible in 1985 (according to a paper by Verhagen and Sauer, published in 2005). These developments were triggered by the conviction of a physician. As of 2002, there can be special grounds on which a physician is not criminally liable if he or she helps someone commit suicide or euthanasia (on the basis of Dutch legislation abbreviated as WTL, which was published in April 2001). The annually reported number of cases of euthanasia in the Netherlands continues to rise, from 2636 in 2009 to 6091 in 2016. The latter constituted 4% of all deaths in the Netherlands, according to official annual report (RTE, 2017), but it is important to keep in mind that this largely concerns people who were about to die, and who were often in great physical pain. The most recent increase concerned mostly patients with cancer, conditions of the nervous system or cardiovascular conditions. There were also increases in notably the number of patients requesting euthanasia who had dementia (32), a psychiatric condition (4) or a challenging combination of age-related conditions (61).
Note that unlike for example the almost standard abortion of children with Down’s in many countries, a general euthanasia practice does not change the makeup of the population, and can therefore not be considered eugenics. The Groningen Protocol was drawn up in 2002, and published in 2005. It does not convey legal protection to doctors who carry out euthanasia on newborns, but lays down guidelines and criteria for how to act and how to document. It came about in conjunction with the local public prosecutor (district attorney). Each incidence of euthanasia on a newborn is thoroughly scrutinized as well as reported to the public prosecutor or district attorney. The Groningen Protocol pertains to three groups of babies. Groups 1 and 2 contain babies who will die soon, with certainty. Also for the Dutch, euthanasia for the third group of babies is highly controversial, however. These are babies who are born with conditions that may allow them to live into adulthood, but who will have lives not worth living in the eyes of some people but not all people. Examples are epidermolysis bullosa, progressive paralysis, a complete lifelong dependency, and a permanent inability to communicate in any way. This includes extreme cases of spina bifida. I feel that it is very important to emphasize the following, as members of the public in other countries may often assume the opposite:
The Groningen Protocol does NOT prescribe that newborns in such situations should be euthanized!
There appears to be a lack of insight into the annual number of babies in the Netherlands whose deaths are induced. A national survey conducted among neonatologists indicated that there would be approximately fifteen to twenty cases of euthanasia of newborns in the Netherlands. Yearly, around 200,000 children are born in the Netherlands, of which about 1000 pass away within a year, which is 0.5% of all newborns (see paper by Verhagen and Sauer published in 2005), so this would be a euthanasia percentage of approximately 0.01. However, between 1997 and 2005, only twenty-two cases of euthanasia of newborns were reported to district attorneys/public prosecutors in the Netherlands. These twenty-two incidences of euthanasia all happened to concern babies with severe spina bifida and/or hydrocephalus (see papers by Verhagen and Sauer and coworkers published in 2005). Also, a few years after the installation of a national review committee in 2007, only one single case had been submitted (see paper by Buiting and coworkers, published in 2010). So it certainly does not appear to be the case that the Groningen Protocol promotes euthanasia for newborns, as is often feared, but there do seem to be some discrepancies in the numbers. It is not entirely clear what causes these discrepancies. The line between euthanasia and natural death of babies in groups 1 and 2 in the Groningen Protocol – babies who are certain to die, no matter what – is obviously fluid. (Just consider that a small dose of morphine has a relaxing effect and alleviates pain, but that a larger dose can kill.) Sparing a baby a few days of pain, is that euthanasia or a natural death? The dividing line is highly transparent. So maybe it is not surprising that perhaps only clear cases of euthanasia of newborns (all in group 3), are
reported in practice. These are babies who may be viable, but whose quality of life would be extremely poor. What we seem to have, though, is a restricted continuum, not a “slippery slope”, a phrase that is very often used, particularly with regard to euthanasia, but also in discussions about other bioethics topics. Many babies are born alive and well. Some babies are born deceased. Other babies die within minutes after birth. Some babies are born with an instantly observed and sometimes even instantly identifiable problem. Other babies are born with a condition that does not come to light immediately. Some babies receive treatment to which they may or may not respond and other babies are put on life support for a while. The latter does not always happen for clear reasons, for example, when they turn out to have a condition for which there is no treatment or cure and will soon die if they aren’t kept alive artificially. So there seem to be three main decisions that can be required. •
To treat (interfere) or not to treat.
To put a baby on life support or not, or take a baby off life support or not.
To let a baby die naturally or actively induce death, with a distinction between babies who are certain to die soon and babies who may be viable.
I imagine that an example of the latter can be the choice between watching a baby gasp for air until the baby dies entirely naturally and preventing such levels of distress by providing a gentler, induced death. It can also mean having to
choose between allowing a child to pass away naturally at for example the age of 3 or inducing the death of a newborn. It is always a matter of seeking the least harmful among painful options, always accompanied by strong emotions and sometimes feelings of hurt and insult on the side of the medical profession as well as differences in opinion. Humans come up with rules such as the Groningen Protocol for various reasons. One such reason is that they want to stop or prevent harm or suffering. While there can be awful harm in unjustified cases of euthanasia, there can also be great harm in letting babies with incurable conditions suffer immense physical pain and distress. A second reason is that they want to provide guidance for physicians and parents who don’t always know what to do in a situation in which a baby with an incurable condition suffers immense pain. In the case of the Groningen Protocol, a specific reason for its development was that the Dutch government had been promising a committee and guidance on the matter since 1997, but never came through on its promises. The Groningen Protocol does not guarantee freedom from prosecution at all, but prevents lengthy police interrogations and helps ensure the documentation of all relevant information. Unfortunately, such protocols of forms of guidance are often mistakenly seen as a “license to kill”, while that is the opposite of what they actually are. Having definitions of what is allowed and what is not allowed helps prevent abuse and adds clarity. As a comparison, consider that laws also regulate burglary and theft. That does not mean at all that they allow burglary and theft, but they can contain guidance for complicated situations,
such as whether or not you can break into someone else’s house when you walk by, think you notice a fire inside and want to make sure nobody’s home or alert and save anyone who is present in the home. Equally, a guideline for euthanasia for newborns is anything but a license for infanticide. I think that cultural differences play a strong role in these matters. There are for example major differences between how the British deal with rules and how the Dutch see rules. On the one hand, the Dutch tend to be very rigid in the application of rules, whereas the British generally feel that rules exist to serve people, not the other way around. (In spite of what many people think, however, judges are not free to do as they please and the application of legislation by courts is bound by much stricter rules than what goes on in everyday life in Britain.) But in Britain, on the other hand, many people still have a strong mass sense of duty toward obedience (the idea that they are subordinates, subjects who must be prescribed by the government what to think and what to do), and the British government often behaves that way too. By contrast, the Dutch have a strong sense of duty toward having opinions of their own and making up their own minds. This means that they approach such regulations with a very different mindset. It is not something that Dutch parents feel is imposed on them or shackles them, the way British citizens tend to feel about any type of regulation or guideline. It does not curb the freedom of Dutch people either, which Americans may believe when they hear how the Dutch approach certain matters. In no way does the Groningen Protocol oblige parents in the Netherlands to carry out euthanasia on any newborns.
The Dutch also have had a long history of bringing subjects into the open that had remained hidden for a long time and a propensity for asking tough and honest questions. Rules and guidelines are not always controversial by themselves, but often because they concern taboo topics or difficult questions that most people prefer not to think about. Openness generally helps prevent abuse, too. Again by way of example, if you watch a complete stranger break into your old neighbor’s house, you will be alarmed and probably call the police because there is openness and clarity about whether or not someone can break into someone else’s house. That openness also means that you can see more clearly what is happening. Childbirth is still largely seen as a natural occurrence in the Netherlands, not a disease condition, and although the number has dropped considerably over the years, 30% of all Dutch births are still home births. The Dutch accept death as unavoidable and natural, just like they see sex as a natural part of life. The latter gave Dutch females a reputation for frivolous looseness in other countries, which wasn’t based on reality but on assumptions. That you accept something as a natural part of life doesn’t mean that you have to indulge in it excessively. Something similar goes for matters like abortion and euthanasia. The Dutch are simply generally very down-to-earth and practical, and they hold honesty and transparency dear. They live in a highly egalitarian society, relative to many other nations, and there is a high level of mutual trust and respect as well as confidence in each other’s abilities. They are much less likely to take each other court than American or British people
(partly because they have much less reason to). This openness and mutual trust means that they can afford to consider options that could be fraught with problems and risks in other countries. As the Dutch believe that everyone has a duty to develop and express one’s own opinion, they are well informed. They also tend to believe that unnecessary suffering can constitute cruelty and that to end intolerable suffering is morally right, is the humane thing to do, and that to allow pain and misery to continue – particularly when it concerns someone who is helpless, such as a baby – when death is a certainty can be selfish and cruel. Most of the Dutch are also meticulous record-keepers and partly because the country is very densely populated, there is high level of (over)regulation. That said, a paper by Silverberg and coworkers about the situation in Argentina hints at the possibility that the application of euthanasia for babies (perhaps particularly in this third category) predominantly happens in countries in which babies with Down syndrome are usually aborted as well. This could indicate that there could be more cases of euthanasia of newborns in these countries that occur as a result of judgments about good and bad as explained in Heather Lanier's wonderful TED Talk and are discriminatory in nature. The percentage of abortions of babies with Down syndrome in the Netherlands lies between 74 and 94, which seems to be higher than in the U.S. (but lower than in Iceland where it is 100). In the U.K., this percentage is 90. By way of exercise, consider the following. In the English city where I live, I sometimes encounter an adult man being
wheeled around in a shopping cart. He is physically alive but seems utterly unaware of his surroundings and completely paralyzed, at first glance. I have never seen him respond to any stimuli, but then, I only see this man in passing from time to time. He appears to be an example of a lifelong dependency coupled to a permanent inability to communicate in any way (group 3 in the Groningen Protocol). I suspect that he is carted around to help prevent bedsores, give him some fresh air and to do what little can be done for the physical being. He appears to be in a complete vegetative state. Does allowing him to stay alive do him any harm? As there appears to be zero awareness, the answer appears to be negative. But this is where the question of human dignity comes into play. We cannot decide for someone else whether he or she is living a life in dignity, but if he or she is not able to form or communicate an opinion on it either, we have to conclude that we are not able to preserve the person’s dignity as the person has zero say in the matter. In principle, that is inhumane. Once such a person is allowed to exist, however, we have a duty to care for the person (certainly morally speaking). That is why group 3 in the Groningen Protocol is so problematic. There is a very thin line between looking after the interests of the baby and the adult the baby may grow into and looking after particularly the financial interests of others. But here we must pause for a moment and consider the major differences that exist in this regard between countries in which the state (or its national insurance policy) takes over most of the costs of the parents and countries in which parents bear most of the financial burden.
Another example to ponder is epidermolysis bullosa, which is a devastating disease. Children with this condition are called butterfly children, which refers to the extreme fragility of their skin. The condition epidermolysis bullosa can be the result of an inherited genetic defect or of an uninherited genetic mutation that occurs relatively frequently (about 1 in 20,000). There used to be no cure. Many of these children do not make it into adulthood, and suffer greatly. In November 2017, however, a Syrian refugee child called Hassan, living in Germany, became the first child to receive what appears to be a cure. Hassan was 7, and dying as a result of a skin infection (a frequent complication of epidermolysis bullosa), which had demolished most of his skin. The DNA in a piece of his skin was repaired and then grafted back onto the child. It is important to note that Hassan had a particular kind of epidermolysis bullosa. A team at Stanford University is working on similar approaches for other types of epidermolysis bullosa, however. This means that from now on, it is no longer justified to perform euthanasia on children with this condition (with the possible exception of variants that remain incurable in the near future if that happens to be the case), in my opinion, as these children will soon be able to live much better lives. But what about for example progressive paralysis? Personally, I would not want to have such a kind of life, but I cannot decide that for someone else. Therefore, a person born with such a condition has to be able to decide whether he or she is living in dignity for himself or herself later and must also have the right to act on it if he or she then feels that he or she is not. The Center for Bioethics and Human Dignity published an
article in 2005 in which the author, Daniel Beals, incorrectly described the Groningen Protocol as an algorithm (an arithmetic or computational method) and in the title, he incorrectly indicated that the Groningen Protocol makes infanticide legal in the Netherlands. In his article, however, he raised the valid point whether the life of a child that is born with spina bifida is a life not worth living. Unfortunately, he did not discuss the differences between mild cases of spina bifida and very severe cases of spina bifida, and it is my understanding that only babies in the latter situation are sometimes euthanized under the Groningen Protocol. Beals appeared to consider it more important whether or not there are “cognitive deficits” and warned that euthanasia of such children comes very close to the practice of old-style eugenics. His article, however, lacks any consideration of the concept of dignity. Yes, he admitted, spina bifida patients need assistance with mobility, bowel and bladder function. This is easy to write for a physician, but doctors are not confronted with the daily reality of what this means. That is the domain of the patients, their nurses and family members. As a young teenager, I helped my cancer-ravaged mother use the bathroom on occasion and I could not help but wonder how she felt about that, certainly given that she had been raised in a relatively prudish Roman Catholic tradition. I never asked my mother that question. I didn’t have the guts. Has Beals asked his spina bifida patients how they perceive their need for assistance with bladder and bowel function and their limited mobility? I cannot decide for a child with spina bifida whether he or she will be living a life in dignity. Neither can Beals. Beals pointed out, though, that it is the task of medicine to come up with solutions. I agree. I hope
that technology will soon come up with much better options that will significantly improve the sense of dignity for some or many of these patients. This discussion indicates how intricately complicated this matter is. But if we want to treat people with fairness (in an egalitarian manner) as well as avoid abuse and excesses, then we must have guidelines. It is unacceptable that Gemma in London would be treated differently than Jeanine in Birmingham (or Jürgen in Munich). It would be inhumane to leave Gemma in so much pain for three or seven years that she feels her life is not worth living until she mercifully passes away while Jeanine was shielded from this pain and powerlessness.
Euthanasia and older minors In Chapter 6, I talked about how setting fixed age limits can help prevent arbitrariness and I suggested the age of majority, for the simple reason that this is the legal age at which we become allowed to make our own decisions. We need to separate the age limits attached to the right of an embryo not to be discriminated against and the right of a resulting human to ask for euthanasia to limit harm. To risk allowing a child to live until the age of majority if that child will have a life that the child considers not worth living can be seen as cruel. It would translate into harm being endured by a child during its entire minority. For euthanasia, however, we also have to keep the time during which a human suffers to a minimum. Also for children, we
primarily have to watch out for the interests of the children. For children too, that would mean limiting the time during which a child would be forced to live a life that he or she does not consider worth living. The problem again is coercion. Undue influence. We (therefore) probably have to restrict euthanasia for minors to physical medical conditions. A child being subjected to psychological abuse or any other form of deliberate or accidental coercion may have ended up with a (transient or permanent) mental medical condition or strong opinion that is purely the result of the abuse or coercion and that could be overcome in adulthood. There is a limit to the number of surgeries and chemotherapies a child can endure, but I struggle with the question as to whether a very young child who has not been able to explore the world yet is able to assess when enough is enough. Is it enough to assume that the medical professionals, parents and others involved in such a decision would always be able to provide the required counterweight? I think so. It would probably be patronizing to assume otherwise. If a young child is able to convince several adults in its surroundings, then we have to assume that the child’s wish is paramount. When I try to come up with an abuse scenario, I can only envisions scenes that belong in James Bond movies and even in such a scenario, the child’s interests at that point would probably still be protected best by following the child’s wishes. At the same time, I acknowledge that many older minors with physical medical conditions are very well able to determine
whether they are living in a way that they like or detest if this is how they will have to live the rest of their lives. But it should not be possible that one child gets to decide about his or her own life, and another does not, simply because they happen to have to deal with different judges or physicians. It does not matter whether the age of 12, the age of 14 or the age of 16 or 10 is used, as long as it applies to everyone. In Belgium, a 17-year-old committed physician-assisted suicide in 2017, two years after the rules for euthanasia were amended to allow euthanasia for children of all ages in Belgium. In such a case, the request has to come from the child, who must be able to make such decisions and it has to concern a hopeless medical situation with unbearable untreatable pain which will soon lead to the child’s death. It requires consulting psychiatrists or psychologists and it also must be approved by the parents. This Belgian solution may to work better in practice than putting an age limit on euthanasia. Putting an age limit on it means that a 12-year-old terminally ill child in unbearable pain who is about to die soon can ask for euthanasia in the Netherlands and in Belgium, but an 11-and-a-half-year-old can only do so in Belgium. Would that be just?
The “completed life” concept Meanwhile, the Dutch have come up with a new idea, namely the “completed life” concept, which would allow people over 75 to end their lives if they feel that their lives are no longer
worth living. It appears to be spearheaded by a politician in her 60s who is highly conscientious, very well informed and for whom I have a great deal of respect. However, I feel that that this concept contributes to the stigmatization of age and hollows out what it constitutes to be alive. It runs the risk of skewing the younger population into believing that old age is not worth living, that life is not worth living unless it’s such great fun that it resembles an insurance or investment commercial, and it also runs the risk of abuse. Just like physical conditions can be externally induced (for example through poisoning), mental states can also be externally induced, by one’s surroundings or by people in one’s surroundings (for example through gaslighting), and this can be impossible to detect. There is a persistent myth that it is good to keep older people in familiar surroundings and not to uproot them, but changing people’s surroundings could be highly beneficial in such circumstances. If people who are physically well feel that their lives are no longer worth living, the attention should be focused on improving non-medical aspects of their quality of life. Work with them. Send them on a holiday. Move them to another town or a better old folks home. Work with them to develop new hobbies. People into their 80s play tennis and run marathons. Here where I live, there is a woman in her 90s who often abseils from tall buildings to raise funds for charities. Suicides seem to be mostly executed by people in their fifties. When you have been burdened by a death wish for a while, this can have a lot to do with one’s surroundings, however, much more than most of us are aware of. People who have been
living in a dead-end situation for years may eventually lose all hope and forget that there is an entire world out there that is much bigger than the four walls of one’s home and one’s office at work. If you are in such a situation and you’re 78 and euthanasia according to the completed life concept is available to you, you might request it. Again. if you live in certain circumstances long enough, it becomes increasingly easy to believe that this is all there is and to forget that there is more to life than one’s immediate surroundings. And hey, since you are now 78 anyway, you might as well pack it in and be done with it. You might convince everyone around you that this is really what you want, whereas what you genuinely want (need) could be something completely different, namely to live at least another 15 years in different circumstances. Hope. A promise of something better around the corner. Allowing euthanasia according to the completed life concept might result in poor people requesting euthanasia – not an unrealistic idea at all – whereas well-to-do people would be able to enjoy the good life longer. Indeed, the completed life concept currently comes much too close to declaring the lives of newborns in third-world countries not worth living either. I also hear an echo in it of declaring people mentally incapacitated because they are “too difficult” so that they can be locked away. So, to me, the concept of making euthanasia available for people who consider their lives “completed” does get too close to the edge of that cliff that we don’t want to tumble from. The completed life concept may become more useful in the
distant future, in a world in which inequality has been eradicated and every human being is able to flourish (without harming others). I may not like the principle of the idea much, as it feels so contrary to life, but I can certainly envisage a more “clinical” future in which it will become normal. When I looked into it a bit further, I learned that the Dutch are taking it very slow with this new idea. They are carrying out an extensive investigation into the topic, including Ph.D. research at the University for Humanistic Studies in Utrecht. I also discovered that most Dutch persons who expressed an interest in the option were either struggling with pain, often in combination with declining physical mobility and/or the feeling of becoming a burden on others, loneliness, and particularly the fear of becoming physically dependent or contracting Alzheimer’s or dementia. Some of them had helplessly witnessed the decline of a partner, occasionally beyond the point at which the partner was still considered competent and would have been able to request euthanasia on medical grounds. At least some of these challenges can and should be addressed in a different way, not through euthanasia. Euthanasia of older adults on medical grounds, by contrast, usually occurs on grounds such as severe lung disease, multiple sclerosis or ALS in the Netherlands. Often missing from the public euthanasia dialogue appear to be the questions how the suicide rate responded in countries in which euthanasia became legally possible and how absolute numbers of euthanasia cases and suicides relate to total population and total number of deaths (rate, percentage). Unfortunately, absolute numbers make juicier headlines. In
terms of absolute numbers, there have been more cases of both euthanasia but also of suicide in the Netherlands in recent years. The suicide percentage, however, is much higher in neighboring Belgium, where euthanasia is possible for human beings of all ages, whereas the suicide percentage in the Netherlands has remained stable since 2013. People who commit suicide in the Netherlands are often between 50 and 60 years old. Men who are divorced or whose spouse has passed away carry the highest suicide risk in the Netherlands. This too may indicate that when people no longer consider life worth living in the Netherlands, this has a lot to do with loneliness. In countries where loneliness is much more part of the culture, the loss of companionship with increasing age may be felt much less as a loss in quality of life. The Netherlands has always had a culture of “gezelligheid” (a high level and certain manner of socializing that contributes considerably to quality of life), but this appears to have been on the decline for some time. It is my impression that there is also less socializing between (strangers in) different age groups in the Netherlands than in for example the US or the UK.
Charlie Gard and Ashya King The cases of Charlie Gard and Ashya King occurred in Britain, shortly after each other. Both could have been handled better and both attracted a great deal of international attention and consternation. Ashya King was living in Portsmouth, England, when he developed a brain tumor, a medulloblastoma. He received
treatment at nearby Southampton General Hospital, where he underwent two surgeries in 2014. The boy was five years old at the time. His parents did their own research and discovered that their son would likely be much better off with a new follow-up treatment (proton treatment) that was not yet available in Britain. They educated themselves and made all the preparations to be able to provide their son with the care that he required, moved him out of the hospital, and then out of the country (first to Spain, where they owned a house; there are ferries from Portsmouth and Southampton to Spain). The city of Portsmouth took legal steps to remove the parents’ parental rights and an international arrest warrant was issued. It required an intervention from David Cameron, who was the British Prime Minister at the time, to resolve the impasse with both parents in detention and their son in a Spanish hospital. Ashya King was allowed to proceed to the proton treatment facility in Prague and eventually, the British National Health Service (NHS) even decided to pay for the treatment in Prague. Ashya King recovered well and went back to school full-time soon after, completely cancer-free. Charlie Gard on the other hand was a little boy with a condition called mitochondrial (DNA) depletion syndrome. This was not detected at birth, but it soon became clear that something was wrong with him. The child ended up on a ventilator in Great Ormond Street (Children’s) Hospital in London. There was no existing treatment for his very rare condition, but an experimental treatment was being developed and used for children in the U.S. with similar conditions, though none had Charlie’s specific variant. Charlie’s parents
soon raised the funds necessary for this experimental treatment. The hospital felt it was best to take Charlie off the ventilator, however, and applied for a court order to be allowed to do so. This situation appeared completely incomprehensible for particularly many Americans for whom healthcare is a service that they can shop around for and seek second opinions on. When I first heard about the situation of little Charlie Gard, I realized that he fell into my definition of lives not worth living. His parents initially struck me as possibly selfish, with a consumer-like view of their child, or perhaps fooling themselves by believing their child was not as damaged as he already had become by his tragic disease. Did they expect him to grow up into a strapping young man if only he got the American experimental treatment? Why couldn’t they simply allow their son to pass away peacefully? I regarded the fight for this new treatment as nothing more than a postponement of his death. He was not viable and was being kept alive artificially. Had it been left up to Mother Nature, he would have passed away a long time ago. I also wondered what the parents would do if they were to give their son the experimental nucleoside treatment, only to find that it had no or only a marginal effect? Would they then want to keep him on a ventilator as long as possible just in case something else came along that might offer them hope? And why all the noise, the protests, the drama, the media circus? A lot of the drama and noise, however, came from people who
had nothing to do with the baby or his parents and were merely trying to grab the limelight for their own purposes, whatever those were. The circus that surrounded Charlie was confusing but it was that circus that made most people aware of his situation. The definition I have drawn up for lives not worth living have the aim to prevent harm and suffering and pertain mostly to the application of IVF, and to pre-birth. Once such a child exists, however, it can be best to do everything we can that could possibly help for the same reasons as why we would treat a child with appendicitis. Because the child will lose his or her life anyway if nothing is done. Charlie did not appear to be in great distress (but that was at the time when Charlie made the headlines and his disease had already done considerable damage to his brain). The treatment might have helped him. This leads back to my definition of harm. In principle, to attempt to improve a condition such as Charlie’s does not constitute harm. But how do we assess the balance between inflicted discomfort or pain (remember the appendicitis example), the likelihood and extent of improvement or recovery, and the discomfort or pain a child is in as a result of his or her condition? The main factor on which everything hinges is pain. Unfortunately, that is hard to assess. Infants may not show it in their behavior when they are in pain or experiencing high levels of stress. Repeated high levels of stress or pain can affect brain development, however. How does that reflect on my definition of a life not worth
living? Does it remain robust? I think it does. I think it is unlikely that there will soon be a treatment for children with the extremely rare condition that Charlie Gard had. I am sure that in the future, we will be able to apply techniques like CRISPR immediately after birth and maybe even in utero (or, more likely, in the lab during embryo creation, if necessary). At that point, embryos and fetuses with Charlie Gard’s condition will no longer have a prognosis that fits my definition of a life not worth living. I initially saw Charlie Gards situation as very different to Ashya King’s. Ashya was much older and had had a healthy, wellfunctioning body. He was not terminal and appeared to have a large chance for recovery. Charlie Gard, however, had never been healthy and it was very unlikely that he would ever make a full recovery. He had a systemic condition that was ravaging his organs, whereas Ashya had a localized condition (albeit in his brain). It seems to me that the main problem was that nobody knew Charlie had this condition when he was born. I can imagine a future in which every newborn’s genome is checked for at least all conditions that, for example, fall under my definition of a life not worth living and then are instantly followed up with repair techniques such as CRISPR if such a condition is found. The problem with situations such as Charlie Gard’s is the risk of arbitrariness, which can lead to unfairness. There is always this tension between, on the one hand, wanting to allow a child to have any possible treatment and, on the other hand, wanting to avoid the situation that one child receives such treatment and another doesn’t, simply because they are in different
jurisdictions. However, something similar applies to any medical treatment. The challenge mainly lies in how on earth the courts are supposed to deal with such situations. (I am not aware of similar Dutch cases, which could be telling. Are Dutch physicians unable to overrule the parents? Do Dutch physicians treat parents much more as equals? In the meantime, there has been another British case that made the news (Isaiah Haastrup’s) and in which a London hospital asked the court permission to withdraw a baby’s life support, at odds with the parents’ wishes. We’ll never know whether Charlie could have benefited from the nucleoside treatment and how much. All the legal steps involved meant that Charlie’s health had meanwhile deteriorated to the point of no return. That feels intuitively wrong, but strangely enough, this dilemma results from the progress medicine has made, from the fact that a child like Charlie can be kept “alive” artificially, (in this case) giving parents false hope. This provides a glimpse into the other side of the Groningen Protocol. Do we, with our current still relatively limited possibilities, have the right to keep a child alive artificially as if that child were no more than some kind of cabbage when that child is not actually viable? I don’t know how to answer that. Yes, Charlie Gard was being kept alive artificially, as if he were a cabbage, but the point at which we leave all declines in health up to nature lies far behind us anyway. So it all seems to lead back to the fact that we seem to be developing a (moral) duty to conduct all possible health tests at birth, including genetics. Situations like Charlie Gard’s also highlight the need for
education, information and openness. One mitochondrial disease does not equal another, just like leg fractures can differ greatly too. I noticed a tendency from parents with children with different mitochondrial diseases to assume that Charlie’s situation was the exact same as the situation of their own child. On the other hand… the medical profession does not have all the answers and is constantly being overtaken by new research results and real-life events.
“The only way of cutting off the constant stream of idiots and imbeciles and feeble-minded persons who help to fill our prisons and workhouses, reformatories, and asylums is to prevent those who are known to be mentally defective from producing offspring. Undoubtedly the best way of doing this is to place these defectives under control. Even if this were a hardship to the individual it would be necessary for the sake of protecting the race.” – The Spectator, 25 May 1912
9. Past and present lessons
Eugenics isn’t a new invention. It’s best known for the excesses that happened only one lifetime ago during World War II. But old-style eugenics aren’t just a thing from the past. It is still happening today, now reinforced by the new eugenics. Here are some illustrative examples gleaned mostly from the internet and the news; see also Chapter 11 for resources.
Austria As recently as 1997, Austria still sterilized mentally handicapped women, most often against their will.
Australia At the end of 2015, The Guardian published an article reporting that the U.N. was examining Australia's practice of forced sterilization of women with disabilities. The article included the example of a 39-year-old woman who was sterilized at age seven because she had a vision impairment. Forced sterilization of Aboriginal women and children may still occur today as well. In the past, Australia treated aboriginals like wild animals or cattle. It also removed large numbers of Aboriginal children from their families and for example placed them in dormitories. Aboriginal people with disabilities made and likely still make up a large proportion of Australia’s prison population.
Belgium Still fairly recently, Belgium sterilized women who were deemed physically or mentally inferior (although it never had a systematic sterilization program). One of these women was Ingrid Van Butsel. She was not allowed to marry her husband in 1985 unless she submitted to sterilization. Supposedly, she was threatened with being hospitalized in a psychiatric institution if she didn’t give in. Although not disabled, she was raised among mentally and physically disabled children after her mother succumbed to tuberculosis. Her intelligence is slightly above average for Flemish women in her age group. In 1997, a Belgian bioethics committee advised the government minister for health that standard forced sterilization of mentally
handicapped persons should never be allowed, and that a multidisciplinary team of people should advise any physician wanting to carry out the sterilization of a mentally handicapped person in incidental cases.
Britain Modern ideas of eugenics began in 19th century Britain with Francis Galton. From there, they appear to have spread to the United States, particularly but not exclusively California., which in turn inspired Adolf Hitler in Germany. Forced sterilization of women with for example learning disabilities currently occasionally takes place in Britain. In British ART practice, it is also essentially forbidden to implant pre-embryos that test positive for certain conditions. Although the following are not examples of eugenics, they are examples of social engineering, hence related. 1.
Fetuses are sometimes removed through C-sections (caesarean), occasionally even from foreign women who are merely passing through a British airport or are visiting Britain, as happened to Alessandra Pacchieri, an Italian woman with bipolar disorder, in 2012. Her baby was adopted by a British couple a year later. (Strong hormone fluctuations also can temporarily impair women who do not have bipolar disorder, but for example a myoma.) Occurrences such as these (including a large number of forced adoptions of children taken away from couples living in Britain) tend to take place in complete secrecy,
and often include gag orders for the parents. These cases are now increasingly brought into the open, however, as a result of pressure from the press and other parties, but also particularly under the encouragement of Britain’s highest family law judge, Sir James Munby. 2.
Then Prime Minister Tony Blair argued in a BBC interview in 2006 that the decision should be made to take children away from certain parents, even before birth, if for example he thought that those children would only grow up to become “hooligans” later. Blair even set and then increased national “adoption targets” for municipalities between 2000 and 2006. In Britain, adoption and fostering have a strong business-like aspect. As the financial rewards are considerable, fostering can provide a livelihood.
Social cleansing also currently takes place in London, where families are removed and rehoused at great distances and where some buildings have two types of entrances, one for wealthy tenants and one for poor tenants, the latter at the back. (Allowing poor tenants as well can have financial advantages for developers.)
On 11 January 2018, The Guardian reported that a secret eugenics meeting had taken place at University College London at which allegedly white supremacists were present as well. The article said that the conference had been convened by someone who has previously advocated child rape.
Canada It is now known that indigenous women (who are used to having large families) were being pressured into sterilization in Saskatoon. Among them was Brenda Pelletier, who underwent the procedure in 2010. She is Metis. Melika Popp was sterilized in 2008. Pressure was also put on Tracy Bannab in 2012. The Saskatoon Health Region apologized and changed its policies. In 1928, the “Sexual Sterilization Act” came into force in Alberta and it wasn’t repealed until 1972. It permitted the sterilization of persons discharged from mental institutions because criminality, mental illness, and immorality were seen as strongly heritable and objectionable. It resulted in the sterilization of 2,832 persons.
Germany Approximately 11 million people were killed during World War II because they were deemed undesirable within the framework of creating a human super race. This widespread extreme practice of eugenics did not only victimize Jews, but also Poles, Roma gypsies and other Slavs (notably Ukrainians and Byelorussians), persons with physical or mental disabilities, Jehovah's Witnesses, alcoholics, homosexuals, dissenting clergy, prostitutes, communists, socialists and other people with dissenting political views. In 1934, 300,000 to 400,000 people were forcibly sterilized, mainly those in mental hospitals and other institutions. The Nazis began killing people with physical and mental handicaps
in 1939. Most people associate the word “eugenics” with these Nazi practices and with the ideas of Nazi leader Adolf Hitler. Among other things, the Nazis introduced the Law for the Prevention of Hereditarily Diseased Offspring in 1933.
India India currently appears to have the practice of forcing women into camps where they are sterilized. The matter recently gained international attention when 60 women fell ill and at least 12 died after a mass sterilization event.
Japan About 25,000 people were sterilized without consent between 1948 and 1996. Japan currently also requires transgender candidates to be sterilized before they can transition, but is facing pressure from the United Nations, the World Health Organization and others to abolish this demand.
Peru In 1996, then-president Alberto Fujimori launched a sterilization program. Although it began with positive intentions and was initially received well, more and more women eventually appear to have been sterilized without their consent. Most of them were poor and indigenous.
Scandinavia Denmark, Finland, Norway and Sweden introduced eugenics laws in the 1930s. In Sweden, 60,000 young women deemed mentally defective or otherwise “incapable of looking after their children” were pressured or forced into sterilization between 1936 and 1976. The reasoning behind it seems to have been threefold: 1.
So-called feeble-minded and insane people were supposed to breed more freely than thrifty and energetic people of “superior” stock.
The government wanted to be “kind” to people who needed “protection” against propagating their own “weak” genes.
The government wanted to save the state the heavy cost of welfare for the very dim.
The Danish sterilized 11,000 people for similar reasons between 1929 and 1967. The Norwegians and Finns each forcibly sterilized around 1,000 women in roughly the same time period. Finland requires transgenders first to be diagnosed with a mental disorder and then to be sterilized if a person wants his or her (trans)gender legally recognized.
United States Federally funded sterilization programs took place in 32 states throughout the 20th century. Their goal was to control the
populations of “undesirables” such as immigrants, people of color, poor people, unmarried mothers, and the physically and mentally disabled. California led these developments, with more than 20,000 Californian men and women in institutions being sterilized between roughly 1909 and 1979, often without their full knowledge and consent. (Apparently, Adolf Hitler – see “Germany” – got his inspiration from California.) The main idea was to eliminate characteristics thought to be associated with “conditions” such as criminality, feeble-mindedness and sexual deviance. Asians and Mexicans were also particularly targeted. Southern states targeted sterilization at African Americans. North Carolina also targeted women seen as “delinquent” or “unwholesome”. In the 1930s, Virginia targeted people deemed feeble-minded and unfit to reproduce, such as the so-called Brush Mountain people. Forced sterilization of Native Americans took place as well, with estimates that as many as 25 to 50 percent of Native American women were sterilized just between 1970 and 1976 alone. Puerto Rico also experienced forced sterilizations at a major scale.
Switzerland Switzerland forcibly sterilized mentally handicapped people on the basis of a 1928 sterilization law. This was challenged in
1997 by the National Council of the Women of Switzerland, which called for a government investigation.
“My life would be rather simple if people would consider me as a person rather than a thing to eradicate.” – Nicolas Joncour
The first part of the quotation I used in Chapter 1 has already ceased to be true for many people and will likely not remain true for humans at all. In the future, humans will stop using sex to reproduce. Women will no longer have periods and PMS. Pregnancies – gestation, incubation – will take place in artificial wombs outside the human body. Maybe we'll purposefully create our offspring from skin cells (artificial gametes from somatic cells) from each of the parents and look after them as if they were precious orchids that we want to see in bloom. Happy and content. Fulfilled. Maybe parenting will become the domain of licensed professionals. Who knows? And, why not? As an earth, marine and environmental scientist, I have recently become pretty devastated by how destructive we’ve been and continue to be toward our own habitat, the planet we know as Earth. So we will either die out as a species because we are simply much too destructive or we will change our ways thoroughly, rapidly and soon.
But even though more people (including Stephen Hawking) are now emphasizing that we need to stop owning and start sharing, I don’t see ourselves slowing down our consumerist tendencies or even turning back the clock unless a major disaster happens that forces us to. That could be something that plunges the earth in darkness and forces us to live without electricity, for instance. Maybe I am just too pessimistic because I am from the "more more more" generation – even though I am also a child of the sixties and seventies – whereas today’s young people develop new values for themselves instead of adopting those of older generations. The internet has a lot to do with that. During the writing of this book, I became thoroughly depressed, though. Nothing hammers home better what a vicious species we humans sometimes are than looking into the topic of eugenics. Even toward our own kind, we seem capable of harboring shockingly little compassion, but, granted, we are also clearly in a slow process of emancipation. I side mostly with Michael Sandel’s views, in principle, although I give a more modern twist to them. It does not matter whether they’re put in different terms, such as Frances Kamm’s, they’re still largely the same views and boil down to doing what’s right, doing what’s humane, and what many people feel is right. By contrast, Julian Savulescu’s views initially struck me as being fueled by some kind of underlying fear that I wasn’t able to identify. His last name made me wonder if he had somehow suffered badly in the Balkan war before I found out that he is Australian (now mainly based at Oxford University). Then I
read a report about a talk he gave at the University of Tokyo in 2011. He appears to be highly worried about the demise of the human species. A response from Fukuma Satoshi (University of Tokyo) to that was “Do we really need to survive as a species if we can only achieve that through technological alterations to the species?” Yes, maybe we really do have to modify ourselves genetically to turn ourselves into a much less destructive species and behave in a much more considerate way. But to what end? Also, this mainly only concerns the damage we do to our environment as a result of our consumerist lifestyles. Instead of focusing on pseudoscientific ideas for making us curb our consumption in a way that will never happen, it would probably be much wiser to dedicate ourselves to creating increasingly larger and more sanctuaries where nature can flourish free from human intervention, as biologist E.O. Wilson (Harvard) recommends. We can do that instantly. We do not need any other country’s approval and it does not require major funding. We merely have to create large areas that we stay out of. The plastic plague probably already makes it unfeasible for the ocean realm and air pollution and so on will still reach such sanctuaries on land too. Still, we can apparently turn a lot of the damage around if we start doing this, but only if we start now, and stick with it. The Aravalli Biodiversity Park in India is probably a good example to illustrate the main idea, but as Wilson explains, such sanctuaries should be connected by corridors.
With regard to finding solutions for the many other problems we face, Jane McGonigal offers a highly attractive alternative to eugenics and related measures: Enhance people’s problemsolving skills. (Watch the TED Talk by Jane McGonigal, previously at the University of California, Berkeley, now Director of Game Research & Development at the Institute for the Future and Chief Creative Officer at SuperBetter Labs.) If you’ve read this book, you’ll have spotted many more options that are available to us. Even the new eugenics doesn’t have to end in drama if we use sufficient wisdom in our approach.
“Few people are capable of expressing with equanimity opinions which differ from the prejudices of their social environment. Most people are incapable of forming such opinions." – Albert Einstein
11. More information Articles in newspapers, magazines and on blogs Adam, Betty Ann (2015) Saskatoon Health Region apologizes after aboriginal women felt pressured by staff to have tubes tied. Postmedia News. Published online on 17 November 2015. Available at http://news.nationalpost.com/news/canada/saskatoonhealth-region-apologizes-after-aboriginal-women-feltpressured-by-staff-to-have-tubes-tied Agerholm, Harriet (2017) Japan urged to scrap law forcing transgender people to be sterilised before they can transition. The Independent. Published online on 1 December 2017. Available at http://www.independent.co.uk/news/world/asia/japantransgender-people-sterilise-before-transition-genderchange-lgbt-rights-a8086341.html Akwagyiram, Alexis (2004) Profiling the stalker and victim. BBC News Online. Available at http://news.bbc.co.uk/1/hi/uk/3717696.stm
Alderson, Andrew, Leapman, Ben, and Harper, Tom. (2007) System taking hundreds of babies for adoption. The Telegraph. Published online on 1 July 2007. Available at http://www.telegraph.co.uk/news/uknews/1556114/Syste m-taking-hundreds-of-babies-for-adoption.html Andersen, Ross. (2012) Why cognitive enhancement is in your future (and your past) (an interview with Allen Buchanan), The Atlantic, February 6 issue. Available at https://www.theatlantic.com/technology/archive/2012/02 /why-cognitive-enhancement-is-in-your-future-and-yourpast/252566/ Aubry, Jason (2017) Ohio lawmakers hear bill that would criminalize aborting children with Down Syndrome. NBC4i. Published online on 24 August 2017. Available at http://nbc4i.com/2017/08/24/lawmakers-hear-bill-thatwould-criminalize-aborting-children-with-down-syndrome/ BBC News (2017) Women 'should be told' sex of foetus in pregnancy scan. BBC News. March 19 issue. Available at http://www.bbc.co.uk/news/uk-39319537 Bayliss, Françoise (2017) Human genome editing: We should all have a say. The Conversation. Published online on 2 August 2017. Available at https://theconversation.com/human-genome-editing-weshould-all-have-a-say-81797 Baynes, Chris (2018) Japanese woman forcibly sterilised as teenager suing government for breach of human rights. The Independent. Published online on 1 February 2018.
Available at http://www.independent.co.uk/news/world/asia/japanesewoman-forcibly-sterilised-teenager-15-suing-governmenthuman-rights-a8188351.html?S2ref=549379 Beals, Daniel (2005) The Groningen Protocol: Making infanticide legal does not make it moral. The Center for Ethics & Human Dignity, Trinity University. Published online on 23 March 2005. Available at https://cbhd.org/content/groningen-protocol-makinginfanticide-legal-does-not-make-it-moral Begley, Sharon (2017) 5 things to know about the experimental treatment Charlie Gard might receive. STAT. Published online on 17 July 2017. Available at https://www.statnews.com/2017/07/17/charlie-gardtreatment/ Bikwas, Soutik (2014) India's dark history of sterilization. BBC News. Published online on November 14. Available at http://www.bbc.co.uk/news/world-asia-india-30040790 Bindel, Julie (2005) The life stealers. The Guardian. Published online on 16 April 2005. Available at https://www.theguardian.com/uk/2005/apr/16/ukcrime.w eekend7 Bowcott, Owen (2014) Mother who drank heavily when pregnant not guilty of crime, court rules. The Guardian. Published online on 4 December 2014. Available at https://www.theguardian.com/law/2014/dec/04/motherdrank-heavily-pregnant-not-guilty-crime
Burke, Jason (2014) India mass sterilisation: women were ‘forced’ into camps, say relatives. The Guardian. Published online on 12 November 2014. Available at https://www.theguardian.com/world/2014/nov/12/indiasterilisation-deaths-women-forced-camps-relatives Burke, Kevin (2017) Disappearance of Down syndrome children in Iceland reveals the slippery slope of prenatal testing to abortion. Washington Examiner. Published online on 16 August 2017. Available at http://www.washingtonexaminer.com/disappearance-ofdown-syndrome-children-in-iceland-reveals-the-slipperyslope-of-prenatal-testing-to-abortion/article/2631689 CBC News (2013) Halifax mom questions Down syndrome suppression. CBC News. Published online on 23 July 2013. Available at http://www.cbc.ca/beta/news/canada/novascotia/halifax-mom-questions-down-syndrome-suppression1.1323401 Chicago Tribune (1997) Europe's taboo, sterilization, out of shadows. Chicago Tribune, issue of 28 August 1997. Available at http://articles.chicagotribune.com/1997-0828/news/9708280294_1_sterilizations-handicapped-nazidictator-adolf-hitler Cohen, I. Glenn (2017) Artificial wombs and abortion rights. DOI: 10.1002/hast.730 Cohen, Jon (2016) Stopping CRISPR’s genome-editing scissors from snipping out of control, Science. doi:10.1126/science.aal0491 Available at
http://www.sciencemag.org/news/2016/12/stoppingcrispr-s-genome-editing-scissors-snipping-out-control Cokley, Rebecca (2017) Please don’t edit me out. Washington Post. Published online on 10 August 2017. Available at https://www.washingtonpost.com/opinions/ifwe-start-editing-genes-people-like-me-might-notexist/2017/08/10/e9adf206-7d27-11e7-a669b400c5c7e1cc_story.html?utm_term=.964f93721b4b Connor, Steve (2014) Three-parent babies: ‘As long as she’s healthy, I don’t care’, says mother of IVF child. The Independent. Published online on 25 August 2014. Available at http://www.independent.co.uk/news/science/threechild-babies-the-mothers-view-as-long-as-she-s-healthy-idon-t-care-9690059.html Cook-Degan, Robert and Maienschein, Jane (2017) Listening for the public voice. Discussions about genetic engineering in humans need input from nonexperts. Slate. Available at http://www.slate.com/articles/technology/future_tense/20 17/08/the_public_needs_to_weigh_in_on_the_ethics_of_g enetically_engineering_humans.html Cowen, Tyler (2017)The Drive for Perfect Children Gets a Little Scary. Bloomberg, Published online on 24 August 2017. Available at https://www.bloomberg.com/view/articles/2017-0824/the-drive-for-perfect-children-gets-a-little-scary
Cyranoski, David (2017) China’s embrace of embryo selection raises thorny questions. Nature 548, 272-274. doi:10.1038/548272a Available at http://www.nature.com/news/china-s-embrace-of-embryoselection-raises-thorny-questions-1.22468 Davies, Caroline (2017) Charlie Gard's short life pitched parents into turmoil and grief The Guardian. Published online on 28 July 2017. Available at https://www.theguardian.com/uknews/2017/jul/28/charlie-gards-short-life-pitched-parentsinto-turmoil-and-grief Davies, Sally (2013) Encounters with the posthuman. Nautilus. Published online on April 29 2013. Available at http://nautil.us/issue/1/what-makes-you-sospecial/encounters-with-the-posthuman Dreger, Alice (2013) For kids, plastic surgery not always the answer. The Atlantic, May 21 issue. Available at https://www.theatlantic.com/health/archive/2013/05/forkids-plastic-surgery-not-always-the-answer/276077/ Elgot, Jessica (2013) Italian woman Alessandra Pacchieri calls on U.K. Social Service to return ‘forced caesarean’ baby. The Huffington Post. Published online on 5 December 2013; updated on 23 January 2014. Available at http://www.huffingtonpost.co.uk/2013/12/05/italyforced-caesarean_n_4388894.html
Emmerich, Nathan (2013) Bioethicists must not allow themselves to become a 'priestly caste'. The increasing use of expert bioethicists has profound anti-democratic implications. The Guardian. Published online on 14 May 2013. Available at https://www.theguardian.com/science/politicalscience/2013/may/14/bioethicists-priestly-caste Florida Center for Instructional Technology (1997-2013) A teacher's guide to the Holocaust. Florida Center for Instructional Technology, College of Education, University of South Florida. Available at https://fcit.usf.edu/holocaust/people/victims.htm Galeon, Dom, and Reedy, Christianna (2017) Kurzweil Claims That the Singularity Will Happen by 2045. Futurism. Available at https://futurism.com/kurzweil-claims-that-thesingularity-will-happen-by-2045/ Hargreaves, Adam (2017) Introducing ‘dark DNA’ – the phenomenon that could change how we think about evolution. The Conversation. Published online on 24 August 2017. Available at https://theconversation.com/introducing-dark-dna-thephenomenon-that-could-change-how-we-think-aboutevolution-82867 Harper, Joyce (in cooperation with Bawden, Tom) (2017) Scientists call for new rules on GM designer babies. Inews.
Available online at https://inews.co.uk/news/health/newrules-will-be-needed-to-exploit-designer-baby-breakthroughin-britain/ Hesman Saey, Tina (2017) Gene editing of human embryos gets rid of a mutation that causes heart failure. Success in correcting DNA defect inches use of CRISPR closer to clinical trial. Science 192 (3), 6. Available at https://www.sciencenews.org/article/crispr-gene-editinghuman-embryos Human Fertilisation and Embryology Authority (2005) Choices & boundaries. Should people be able to select embryos free from an inherited susceptibility to cancer? Public consultation. HFEA. Available at http://hfeaarchive.uksouth.cloudapp.azure.com/www.hfea. gov.uk/docs/Choices_and_Boundaries.pdf Hunter, Philip (2010) The psycho gene. EMBO reports 11(9), 667-669. doi:10.1038/embor.2010.122 Available at https://www.ncbi.nlm.nih.gov/pmc/articles/ PMC2933872/ Jabour, Bridie (2015) UN examines Australia's forced sterilisation of women with disabilities. The Guardian. Published online on 10 November 2015; last modified on 26 October 2016. Available at https://www.theguardian.com/australianews/2015/nov/10/un-examines-australias-forcedsterilisation-of-women-with-disabilities
Joncour, Nicolas (2016) The right to an education. Website of Henny Kupferstein. Available at https://hennyk.com/2016/09/26/the-right-to-aneducation-article-typed-by-non-verbal-autistic-pianostudent-with-dyspraxia/ King, David (2017) Editing the human genome brings us one step closer to consumer eugenics. The Guardian. Published online on 4 August 2017. Available at https://www.theguardian.com/commentisfree/2017/aug/0 4/editing-human-genome-consumer-eugenics-designerbabies Klosterman, Chuck (2013) There are no sound moral arguments against performance-enhancing drugs. The Ethicist (The New York Times Magazine). Published online on August 30. Available at http://www.nytimes.com/2013/09/01/magazine/thereare-no-sound-moral-arguments-against-performanceenhancing-drugs.html Ko, Lisa (2016) Unwanted sterilization and eugenics programs in the United States. PBS, Human Rights Section. Published online on January 29, 2016. Available at http://www.pbs.org/independentlens/blog/unwantedsterilization-and-eugenics-programs-in-the-united-states/ Kula, Shane (2016) Three-Parent Children Are Already Here. In the late ’90s and early ’00s, 30 to 50 children were born using techniques similar to those under debate now. Slate. Published online on 18 February 2016.
Available at http://www.slate.com/articles/technology/future_tense/20 16/02/three_parent_babies_have_been_here_since_the_lat e_90s.html Lant, Karla, and Norman, Abby (2017) Tech expert warns that AI could become “a fascist’s dream”. Futurism. Available at https://futurism.com/tech-expert-warns-thatai-could-become-a-fascists-dream/ Ledford, Heidi (2016) CRISPR: gene editing is just the beginning. Nature 531, 156-159. Available at http://www.nature.com/news/crispr-gene-editing-is-justthe-beginning-1.19510 Lizarzaburu, Javier (2015) Forced sterilisation haunts Peruvian women decades on. BBC News. Published online on December 2, 2015. Available at http://www.bbc.co.uk/news/world-latin-america-34855804 Mind (2017) PIP ruling a ‘victory for people with mental health problems’, says Mind. Mind. Published online on 21 December 2017. Available at https://www.mind.org.uk/news-campaigns/news/pipruling-a-victory-for-people-with-mental-health-problemssays-mind/#.WnGRgdRpH3A Nelson, Fraser (2016) The return of eugenics. The Spectator, April 2 issue. Available at https://www.spectator.co.uk/2016/04/the-return-ofeugenics/
Ohikuare, Judith (2014) Life as a nonviolent psychopath. The Atlantic, January 21 issue. Available at http://www.theatlantic.com/health/archive/2014/01/lifeas-a-nonviolent-psychopath/282271/ Paris, J.J., Ahluwalia, J., Cummings, BM, Moreland, MP, and Wilkinson, D.J. (2017) The Charlie Gard case: British and American approaches to court resolution of disputes over medical decisions. Journal of Perinatology 37(12), 12691271. Available at https://www.ncbi.nlm.nih.gov/pmc/ articles/PMC5712473/ Potter, Jessica (2017) New discriminatory NHS policy is bad for your health, whoever you are. The Conversation. Published online on 29 September 2017. Available at https://theconversation.com/new-discriminatory-nhspolicy-is-bad-for-your-health-whoever-you-are-84855 Potter, Jessica (2017) NHS urged to share data so patients can be deported. Published online on 6 February 2017. Available at https://theconversation.com/nhs-urged-toshare-data-so-patients-can-be-deported-72380 Pressman, Matthew (2013) The Myth of FDR’s Secret Disability. Time. Published online on July 12, 2013. Available at http://ideas.time.com/2013/07/12/the-mythof-fdrs-secret-disability/ Rawlinson, Kevin and Adams, Richard (2018) UCL to investigate eugenics conference secretly held on campus.
Published online on 11 January 2018. Available at https://www.theguardian.com/education/2018/jan/10/uclto-investigate-secret-eugenics-conference-held-on-campus Regalado, Antonio (2015) Engineering the perfect baby. MIT Technology Review. Published online on 5 March 2015. Available at https://www.technologyreview.com/s/535661/engineering -the-perfect-baby/ Regalado, Antonio (2016) Human-animal chimeras are gestating on U.S. research farms. MIT Technology Review. Published online on 6 January 2016. Available at https://www.technologyreview.com/s/545106/humananimal-chimeras-are-gestating-on-us-research-farms/ Regalado, Antonio (2017) Doctors plan bold test of gene therapy on boys with muscular dystrophy. MIT Technology Review. Published online on 17 August 2017. Available at https://www.technologyreview.com/s/608575/doctorsplan-bold-test-of-gene-therapy-on-boys-with-musculardystrophy/ Reuell, Peter (2017) New insight on height, arthritis. Harvard Gazette, 25 July. Available at https://news.harvard.edu/gazette/story/2017/07/newinsight-on-height-arthritis Rochman, Bonnie (2017) The disturbing, eugenics-like reality unfolding in Iceland. Quartz. Published online on 19 August 2017. Available at https://qz.com/1056810/thedisturbing-eugenics-like-reality-unfolding-in-iceland/
RTE (2017) Jaarverslag 2018. RTE. 31 pages. Available at https://www.euthanasiecommissie.nl/detoetsingscommissies/uitspraken/jaarverslagen/2016/april/1 2/jaarverslag-2016 Rutecki, Gregory W. (2010) Forced sterilization of Native Americans: Late twentieth century physician cooperation with national eugenic policies. The Center for Bioethics and Human Dignity, Trinity International University. Published online on October 8, 2010. Available at https://cbhd.org/content/forced-sterilization-nativeamericans-late-twentieth-century-physician-cooperationnationalSalter, Frank K. (2015) Eugenics, ready or not. Quadrant. Published online on 11 May 2015. Available at https://quadrant.org.au/magazine/2015/05/eugenicsready/ Sandel, Michael J. (2004) The Case Against Perfection, The Atlantic, April issue. Available at https://www.theatlantic.com/magazine/archive/2004/04/t he-case-against-perfection/302927/ Satoshi, Fukuma (2011) Fit for the Future? Modern technology, liberal democracy and the urgent need for moral improvement, in: DALS Newsletter 28/29, page 14. Available at http://www.l.utokyo.ac.jp/shiseigaku/pdf/NL28-29e.pdf
Saul, Heather (2016) Professor Stephen Hawking: Humanity will not survive another 1,000 years if we don’t escape our planet. The Independent. Published online on 15 November 2016. Available at http://www.independent.co.uk/news/people/professorstephen-hawking-humanity-wont-survive-1000-years-onearth-a7417366.html Schmitt, David P. (2016) Sex and Gender Are Dials (Not Switches). Sexual diversity as obliquely interconnected dimensions. Psychology Today. Published online 13 May 2016. Available at https://www.psychologytoday.com/blog/sexualpersonalities/201605/sex-and-gender-are-dials-not-switches Scottish Council on Human Bioethics (2006) Response to HFEA consultation “Choices & boundaries. Should people be able to select embryos free from an inherited susceptibility to cancer?” SCHB. Available at http://www.schb.org.uk/downloads/publications/consult_ choices_and_boundaries_jan06.pdf Stromberg, Joseph (2013) The neuroscientist who discovered he was a psychopath. smithsonian.com. Published online on November 22, 2013. Available at http://www.smithsonianmag.com/science-nature/theneuroscientist-who-discovered-he-was-a-psychopath180947814/ Smith, David (2018) Ex-tech workers plead with Facebook: consider the harm you are doing to kids. The Guardian.
Published online on 8 February 2018. Available at https://www.theguardian.com/technology/2018/feb/07/fa cebook-common-sense-media-tech-addictions-children The Economist (1997) Nordic eugenics. Here, of all places. The Economist, Issue of August 28 1997. Available at http://www.economist.com/node/155244 Thomasen, Katrine (2016) Advancing women’s sexual and reproductive rights in Europe – a snapshot of legal and policy progress from 1986 to 2016. WHO. Available at http://www.euro.who.int/__data/assets/pdf_file/0015/33 0090/4-Advancing-womens-sexual-reproductive-rights-inEurope.pdf Tingley, Kim (2104) The Brave New World of Three-Parent I.V.F. New York Times. Published online on 27 June 2014. Accessible at https://www.nytimes.com/2014/06/29/magazine/thebrave-new-world-of-three-parent-ivf.html Tremonti, Anna Maria, and Mattar, Pacinthe (2016) Aboriginal women say they were sterilized against their will in hospital. CBC. Published online on January 7. Available at http://www.cbc.ca/radio/thecurrent/the-current-forjanuary-7-2016-1.3393099/aboriginal-women-say-they-weresterilized-against-their-will-in-hospital-1.3393143 WHO (2017) "Depression: let’s talk" says WHO, as depression tops list of causes of ill health. News release. WHO. Published online 30 March 2017. Available at http://www.who.int/mediacentre/news/releases/2017/wor
ld-health-day/en/ Wilkinson, Dominic and Savulescu, Julian (2017) Hard lessons: learning from the Charlie Gard case. Practical Ethics. Published online on 24 July 2017. Available at http://blog.practicalethics.ox.ac.uk/2017/07/hard-lessonslearning-from-the-charlie-gard-case/
Books and book chapters Bintanja, Richard (2017) The ultimate brainchild. Marisuda, Lelystad, the Netherlands. 227 pages. (English translation by Angelina Souren of Dutch original.) ISBN/EAN 978-90818264-3-3. (Also available as e-book.) Buchanan, Allen (2013) Beyond humanity?: The ethics of biomedical enhancement. Oxford University Press. 298 pages. Coelho, Paulo (2008) The winner stands alone. Translated from the Portuguese by Margaret Jull Costa. HarperCollinsPublishers. 373 pages. Connolly, Joseph (2015) Style. Quercus, London, U.K. 489 pages. Fieser, James (2001) Moral philosophy through the ages. McGraw-Hill Higher Education. 294 pages. The chapter on utilitarianism can be accessed at https://www.utm.edu/staff/jfieser/class/300/ utilitarian.htm
Harris, John (2016) How to be good. Oxford University Press. 224 pages. Kuhse, Helga, Schuklenk, Udo, and Singer, Peter (Editors) (2015) Bioethics: An Anthology, 3rd Edition. WileyBlackwell. 800 pages. Persson, Ingmar, and Savulescu, Julian (2012) Unfit for the future. Oxford University Press. 156 pages. Sandel, Michael J. (2009) Justice. What’s the right thing to do? Penguin Books, 308 pages. Sandel, Michael (2009) The case against perfection. Harvard University Press. 176 pages. Unger, David (2011) Chapter 5: Genetic and reproductive control. In: The Canadian bioethics companion. an online textbook for Canadian ethicists and health care workers. Available at http://canadianbioethicscompanion.ca/thecanadian-bioethics-companion/chapter-5-genetic-andreproductive-control/ Wilkinson, Dominic (2016) Chapter 4 Who should decide for critically ill neonates and how? The grey zone in neonatal treatment decisions. In: McDougall R, Delany C, Gillam L, editors. When Doctors and Parents Disagree: Ethics, Paediatrics & the Zone of Parental Discretion. The Federation Press, Sydney, Australia. 13 pages. Available at https://www.ncbi.nlm.nih.gov/pubmed/28661627 Wilson, E.O. (2016) Half-Earth: Our Planet’s Fight for Life. Liveright, New York, U.S.A. 272 pages.
Courses Cohen, I. Glenn and others. EDX course “Bioethics: The Law, Medicine, and Ethics of Reproductive Technologies and Genetics. An introduction to the study of bioethics and the application of legal and ethical reasoning.” by Harvard Law School. https://www.edx.org/course/bioethics-law-medicineethics-harvardx-hls4x-0 Amnesty International, Curtin University, Louvain University and others. Human rights courses on EDX https://www.edx.org/course?search_query=human+rights Sandel, Michael J. EDX course “Justice. What's the right thing to do?” by Harvard University. https://www.youtube.com/watch?v=kBdfcR8hEY&list=PL30C13C91CFFEFEA6 https://www.edx.org/course/justice-harvardx-er22-1x-2 Unesco. Climate Justice: Lessons from the Global South. Understand how we can balance human needs with caring for the planet with this free online course about climate change. https://www.futurelearn.com/courses/climate-justice University of Colorado, University of Strathclyde, University of New South Wales and others. Human rights courses on FutureLearn. https://www.futurelearn.com/search?utf8=%E2%9C%93& q=human+rights
University of Michigan, University of Capetown, MIT and others. Justice courses on study.com. https://study.com/articles/List_of_Free_Online_Criminal_ Justice_Courses_Classes_and_Training_Programs.html University of Sheffield, University of York, University of East Anglia and others. Justice courses on FutureLearn. https://www.futurelearn.com/search?utf8=%E2%9C% 3&q=justice University of Twente. Philosophy of Technology and Design: Shaping the Relations Between Humans and Technologies. https://www.futurelearn.com/courses/philosophy-oftechnology VanRooyen, Michael, Leaning, Jennifer and others (2016) EDX course “Humanitarian response to conflict and disaster” by Harvard Humanitarian Initiative and Harvard Center for Health and Human Rights. ttps://www.edx.org/course/humanitarian-responseconflict-disaster-harvardx-ph558x-0
Scholarly articles and reports Benston, Shawna (2016) CRISPR, a crossroads in genetic intervention: pitting the right to health against the right to disability. Laws 5(5); doi:10.3390/laws5010005. Available at http://www.mdpi.com/2075-471X/5/1/5/pdf
Bioethics Observatory (2017) The biological status of the early human embryo. When does human life begin? Bioethics Observatory - Institute of Life Sciences UCV. Published online on 13 June 2017. 14 pages. Available at http://www.bioethicsobservatory.org/2017/06/biologicalstatus-early-human-embryo/21605 Boon, J.C.W. and Sheridan, L. (2001). Stalker typologies: A law enforcement perspective. Journal of Threat Assessment, 1, 75-97. (Can also be found in book published in May 2008: Stalking and Psychosexual Obsession: Psychological Perspectives for Prevention, Policing and Treatment, pages 63 - 82.) Available at https://www.researchgate.net/publication/227990165_Stalk er_Typologies_Implications_for_Law_Enforcement Brunetta d'Usseaux, Francesca (2001) Wrongful life and wrongful birth cases: a comparative approach. Etica & Politica / Ethics & Politics III (2001)1. 5 pages. Available at https://www.openstarts.units.it/handle/10077/5603 Buchanan-Smith, Maggie (2003) How the Sphere Project Came into Being: A Case Study of Policy-Making in the Humanitarian Aid Sector and the Relative Influence of Research. Working Paper 215. Overseas Development Institute, London, U.K. 34 pages. Buiting, H.M., Karelse, M.A., Brouwers, H.A., OnwuteakaPhilipsen, B.D., Heide, A. van der, and Delden, J.J. van (2010) Dutch experience of monitoring active ending of life for newborns. J. Med Ethics 36(4), 234-237.
Cohen, Glenn I. (2009) Intentional diminishment, the nonidentity problem, and legal liability. Hastings Law Journal 60: 347-375. Available at http://ssrn.com/abstract=1330504 Cohen, I Glenn and Chen, Daniel L. (2010) Trading-off reproductive technology and adoption: Does subsidizing IVF decrease adoption rates and should it matter? Minnesota Law Review 95, 485-577. Available at http://scholarship.law.duke.edu/cgi/viewcontent.cgi?article =2960&context=faculty_scholarship and https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1664 501 Cohen, I. Glenn, Savulescu, Julian, Adashi, Eli Y. (2015) Transatlantic lessons in regulation of mitochondrial replacement therapy. Science 348(6231), 178-180. Condic, Maureen (2014) A Scientific View of When Life Begins. “On point” report by the Lozier Institute. 5 pages. Available at https://lozierinstitute.org/a-scientific-view-ofwhen-life-begins/ El-Toukhy, Tarek., Williams, Clare. and Braude Peter (2008) The ethics of preimplantation genetic diagnosis. The Obstetrician & Gynaecologist. doi:10.1576/toag.10.1.049.27378 Available at http://onlinelibrary.wiley.com/doi/10.1576/toag.10.1.049.2 7378/full European Parliament (2016) Adoption without consent. Update 2016. Study for the Peti Committee.
Available at http://www.europarl.europa.eu/RegData/etudes/STUD/2 016/556940/IPOL_STU(2016)556940_EN.pdf Falzon, Christopher (2014) Wrongful birth and wrongful life: legal and moral issues. Master's thesis. University of Malta, 130 pages. DOI: 10.13140/RG.2.1.2156.4649 Available at https://www.researchgate.net/publication/281372405_Wro ngful_Life_Wrongful_Birth_-_Legal_and_Moral_Issues Ferrari, Alize J., Charlson, Fiona J., Norman, Rosana E., Patten, Scott B., Freedman, Greg, Murray, Christopher J.L., Vos, Theo, and Whiteford, Harvey A. (2013) Burden of depressive disorders by country, sex, age, and year: findings from the Global Burden of Disease study 2010. PLOS Medicine 10(11), 1-12. Available at http://journals.plos.org/plosmedicine/article?id=10.1371/j ournal.pmed.1001547 Fordham, Brigham A. (2011) Disability and designer babies. Valparaiso University Law Review 45(4), 159-214. Available at http://scholar.valpo.edu/cgi/viewcontent.cgi?article=2219 &context=vulr Fox, Dov (2007) The illiberality of ‘liberal eugenics’. Available at http://works.bepress.com/dov_fox/13 and http://ssrn.com/abstract=1072104 Galton, David J. and Galton, Clare J. (1998) Francis Galton: and eugenics today. Journal of Medical Ethics 24, 99-105.
Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1377454 / Giesen, I. (2009) Of wrongful birth, wrongful life, comparative law and the politics of tort law systems. Tydskrif vir Heedendaagse Romeins-Hollandse Reg (THRHR) 72, 257-273. Available at https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1424 901 Giesen, Ivo (2012) The Use and Influence of Comparative Law in ‘Wrongful Life’ Cases. Utrecht Law Review 8(2), 3554. doi: 10.1136/jme.28.2.63 Available at https://papers.ssrn.com/sol3/papers.cfm?abstract_id=2063 503 Greely, Henry T. (2008) Remarks on human biological enhancement. Kansas Law Review 56, 1139-1157. Available at https://law.drupal.ku.edu/sites/law.drupal.ku.edu/files/ docs/law_review/v56/05%20Greely%20Remarks_Final.pdf Hendriks, S., Dancet, E.A., Pelt, A.M. van, Hamer, G., and Repping S. (2015) Artificial gametes: a systematic review of biological progress towards clinical application. Hum Reprod Update, 21(3), 285-296. Available at https://www.ncbi.nlm.nih.gov/pubmed/25609401/
Hiam, Lucinda, Steele, Sarah, and McKee, Martin (2018) Creating a ‘hostile environment for migrants’: the British government’s use of health service data to restrict immigration is a very bad idea. Health Economics, Policy and Law. Published online on 8 January 2018. https://doi.org/10.1017/S1744133117000251 Im, Wooseok, Moon, Jangsup, Kim, Manho (2016) Applications of CRISPR/Cas9 for Gene Editing in Hereditary Movement Disorders. J Mov Disord 9(3), 136143. Available at https://www.ejmd.org/journal/view.php?doi=10.14802/jmd.16029 Inhorn, Marcia C., and Patrizio, Pasquale (2015) Infertility around the globe: new thinking on gender, reproductive technologies and global movements in the 21st century. Human Reproduction Update 21(4), 411-426. Advanced Access publication on March 22, 2015 doi:10.1093/humupd/dmv016. Available at https://academic.oup.com/humupd/article/21/4/411/683 746/Infertility-around-the-globe-new-thinking-on Jayakumar, Sri Vidhya (2009) Liability of a mother for prenatal negligence to her child: A case for equal parenthood. Paper presented in the National Conference on Gender Equity at work and Home. A key to National Development held on 9-10 Jan. 2009 at K.G. Somaiya College, Mumbai, India. 8 pages
Kamm, Frances (2005) "Is there a problem with enhancement?" The American Journal of Bioethics 5(3), 814. Kass, Leon (1998) The wisdom of repugnance: why we should ban the cloning of humans. Valparaiso University Law Review 32(2), 679-705. Available at http://scholar.valpo.edu/vulr/vol32/iss2/12 King, Jaime S. (2008) Duty to the unborn: a response to Smolensky. Hastings Law Journal 60, 377-395. Available at http://repository.uchastings.edu/faculty_scholarship/327 Lindeman, Hilde and Verkerk. Marian (2008) Ending the Life of a Newborn: The Groningen Protocol. The Hastings Center Report, January-February 2008 issue, 42-51. Lysaught, M. Therese (2002) Wrongful Life? The Strange Case of Nicholas Perruche. Commonweal 129(22 March), 911. Available at http://ecommons.luc.edu/ips_facpubs/8/ Macklin, Ruth (2003) Dignity is a useless concept. British Medical Journal 327, 1419-1420. Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC300789/ National Council on Disability (2008) Finding the gaps: A comparative analysis of disability laws in the United States to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Available at http://www.hpod.org/
Nys, H.F.L.and Dute, J.C.J. (2004) A wrongful existence in the Netherlands. J Med Ethics 30,393-394. doi: 10.1136/jme.2003.005215 Available at http://jme.bmj.com/content/30/4/393 Ouellette, Alicia (2008) Insult to injury: A disability-sensitive response to Smolensky’s call for parental tort liability for preimplantation genetic interventions. Hastings Law Journal 60, 397-410. Available at https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1273 714 Owagage, Mpaata (2014) Wrongful life:An analysis of crossjurisdictional approaches. Melismata 1(February), 1-33. Available at http://law.unimelb.edu.au/__data/assets/pdf_file/0008/15 95501/MELISMATA-ISSUE11.pdf Pera, Alessandra (2017) Wrongful Birth and Wrongful Life. Floodgate argument and the balancing of contrasting rights in courts law making. Presented at 7th World Congress on Family Law and Children's Rights, 5-7 June 2017, Dublin, Ireland. Available at https://iris.unipa.it/retrieve/handle/10447/235873/437360 /WrongfulBirthandWrongfulLifeFooldgateArgumentBalanci ngofcontrastinginterests.pdf Perry, Ronen (2008) It’s a wonderful life. Cornell Law Review 93, 329-399. Available at https://papers.ssrn.com/sol3/Papers.cfm?abstract_id=9778 52
Persson, Ingmar and Savulescu, Julian (2016) Moral bioenhancement, freedom and reason. Neuroethics. Published online 9 July. DOI 10.1007/s12152-016-9268-5. Available at https://link.springer.com/article/10.1007/s12152-0169268-5 Präg, Patrick, and Mills, Melinda C. (2015) Assisted reproductive technology in Europe. Usage and regulation in the context of cross-border reproductive care. Families and Societies, Working Paper Series 43. Also Forthcoming as a chapter in the volume Childlessness in Europe. Patterns, Causes, and Contexts, edited by Michaela Kreyenfeld and Dirk Konietzka. Available at http://www.familiesandsocieties.eu/wpcontent/uploads/2015/09/WP43PragMills2015.pdf Royal Courts of Justice (2014) CP (A Child) v First-Tier Tribunal (Criminal Injuries Compensation) & Ors  EWCA Civ 1554 (04 December 2014) Case No: C3/2014/0775. Available at http://www.bailii.org/ew/cases/EWCA/Civ/2014/ 1554.html Royal Courts of Justice (2017) Neutral Citation Number:  EWHC 3375 (Admin) Case No: CO/2496/2017. Available at http://www.bailii.org/ew/cases/EWHC/Admin/2017/ 3375.html
Savulescu, Julian (2001) Procreative beneficence: Why we should select the best children. Bioethics 15(5/6), 413-426. Available at http://onlinelibrary.wiley.com/doi/10.1111/ 1467-8519.00251/epdf Sheldon, Tony (2005) Dutch Supreme Court backs damages for child for having been born. BMJ 330 (2 April). Available at http://www.bmj.com/content/330/7494/747.1 Sheridan, Lorraine (2002) Types of stalker. Presentation given on 12 September, 2002 at 16:00. eBulletin University of Leicester. Available at https://www.le.ac.uk/press/ebulletin/archive/ speaker_sheridan.html Silverberg, Agustín, Villar, Marcelo J., and Mesurado, Belén (2017) Euthanasia in critically ill neonates in Argentina. Medicina e Morale 5, 591-601. Simpson, Bob (2017) A “we’”problem for bioethics and the social sciences : a response to Barbara Prainsack. Science, technology, and human values. Deposited in Durham Research Online on 18 September 2017. 13 pages. Available at http://dro.dur.ac.uk/22917/ Smajdor, Anna and Cutas, Daniela (2015) Artificial Gametes. Background paper. Nuffield Council on Bioethics. 21 pages. Available at http://nuffieldbioethics.org/wpcontent/uploads/Background-paper-2016-Artificialgametes.pdf Smolensky, Kirsten Rabe (2008) Creating children with
disabilities: parental tort liability for preimplantation genetic interventions. Arizona Legal Studies, Discussion Paper No. 08-15. Available at http://ssrn.com/abstract=1158631 Spriggs , M., and Savulescu, J. (2002) The Perruche judgment and the “right not to be born”. J Med Ethics 28, 63-64. Available at http://jme.bmj.com/content/28/2/63 Stein, Michael Ashley (2004) Generalizing disability. Michigan Law Review 102, 1601-1617. Stein, Michael Ashley and Stein, Penelope J.S. (2007) Beyond disability civil rights. Hastings Law Journal 58, 12031240. Available at https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1552 010 Tilley, Elizabeth, Earle, Sarah, Walmsley, Jan and Atkinson, Dorothy (2012) ‘The Silence is roaring’: sterilization, reproductive rights and women with intellectual disabilities. Disability and Society 27(3) 413-426. Available at http://oro.open.ac.uk/30719/2/Silence_is_roaring.pdf United Nations, Department of Economic and Social Affairs, Population Division (2015). World Fertility Patterns 2015 – Data Booklet (ST/ESA/SER.A/370), 30 pages. Available at http://www.un.org/en/development/desa/population/pub lications/pdf/fertility/world-fertility-patterns-2015.pdf
Velasquez, M., Andre, C., Shanks, T., and Meyer, M. J. (1989) Calculating consequences: The utilitarian approach to ethics. Issues in Ethics 2(1) (Winter 1989). Available at https://www.scu.edu/ethics/ethics-resources/ethicaldecision-making/calculating-consequences-the-utilitarianapproach/ Verhagen, Eduard and Sauer, Pieter J.J. (2005) The Groningen Protocol – Euthanasia in severely ill newborns. N Engl J Med 352, 959-962. Available at http://www.nejm.org/doi/full/10.1056/NEJMp058026 Wijngaarden, Els van, Leget, Carlo and Goossensen, Anne (2015) Ready to give up on life: The lived experience of elderly people who feel life is completed and no longer worth living. Social Science & Medicine 138, 257-264. Available at https://ac.els-cdn.com/S0277953615002889/1s2.0-S0277953615002889-main.pdf?_tid=80f432e0-edcd11e7-993c00000aab0f26&acdnat=1514685434_0b38f23b28ec70c2cd5 3776218c61c43 Wilkinson, James E. (2009) Groningen Protocol. Position Paper on the Disability Stereotypes, International Human Rights and Infanticide. International Federation for Spina Bifida and Hydrocephalus. Available at https://www.ifglobal.org/images/stories/groningen-d.pdf
Wilkinson, Dominic, Skene, Loane, Crespigny, Lachlan De, and Savulescu, Julian (2016) Protecting future children from in-utero harm. Bioethics 30(6), 425-432. doi:10.1111/bioe.12238 Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4913745 /pdf/BIOE-30-425.pdf
Videos Anholt, Simon. Which country does the most good for the world? https://www.ted.com/talks/simon_anholt_which_country_ does_the_most_good_for_the_world Bohorquez, Diego. TED Talk : How does our gut talk to our brain? https://www.youtube.com/watch?v=utFG8GEvmfg Bregman, Rutger. Poverty isn't a lack of character; it's a lack of cash. https://www.ted.com/talks/rutger_bregman_poverty_isn_t _a_lack_of_character_it_s_a_lack_of_cash Cohen, Glenn. Are There Non-human Persons? Are There Non-person Humans? (TEDxCambridge) https://www.youtube.com/watch?v=8Z8MMS0Su4o
Doudna, Jennifer. We can now edit our DNA but let’s do it wisely https://www.ted.com/talks/jennifer_doudna_we_can_now _edit_our_dna_but_let_s_do_it_wisely Enriquez, Juan. We can reprogram life. How to do it wisely https://www.ted.com/talks/juan_enriquez_we_can_ reprogram_life_how_to_do_it_wisely Fallon, James. The Moth: Confessions of a Pro-Social Psychopath (World Science Festival) https://www.youtube.com/watch?v=fzqn6Z_Iss0 Feldman-Barrett, Lisa You aren't at the mercy of your emotions -- your brain creates them https://www.ted.com/talks/lisa_feldman_barrett_you_aren _t_at_the_mercy_of_your_emotions_your_brain_creates_ them Generous, Alix. How I learned to communicate my inner life with Asperger’s http://www.ted.com/talks/alix_generous_how_i_learned_ to_communicate_my_inner_life_with_asperger_s Grandin, Temple. The world needs all kinds of minds http://www.ted.com/talks/temple_grandin_the_world_nee ds_all_kinds_of_minds Jegede, Faith. What I’ve learned from my autistic brothers http://www.ted.com/talks/faith_jegede_what_i_ve_learned _from_my_autistic_brothers
Jorgenson, Ellen. What you need to know about CRISPR https://www.ted.com/talks/ellen_jorgensen_what_you_ need_to_know_about_crispr Kahn, Jennifer. Gene editing can now change an entire species forever https://www.ted.com/talks/jennifer_kahn_gene_editing_ can_now_change_an_entire_species_forever King, Rosie. How autism freed me to be myself http://www.ted.com/talks/rosie_king_how_autism_freed_ me_to_be_myself Knoepfler, Paul. The ethical dilemma of designer babies https://www.ted.com/talks/paul_knoepfler_the_ethical_ dilemma_of_designer_babies Lanier, Heather. "Good" and "bad" are incomplete stories we tell ourselves https://www.ted.com/talks/heather_lanier_good_and_bad _are_incomplete_stories_we_tell_ourselves Marsh, Abigail. Why some people are more altruistic than others https://www.ted.com/talks/abigail_marsh_why_some_ people_are_more_altruistic_than_others/ McGonigal, Jane. Gaming can make a better world https://www.ted.com/talks/jane_mcgonigal_gaming_can_ make_a_better_world
McGonigal, Kelly. How to make stress your friend https://www.ted.com/talks/kelly_mcgonigal_how_to_ make_stress_your_friend Ockelford, Adam. Derek Paravicini and Adam Ockelford in the key of genius http://www.ted.com/talks/derek_paravicini_and_adam_ ockelford_in_the_key_of_genius Piff, Paul. Does money make you mean? http://www.ted.com/talks/paul_piff_does_money_make_ you_mean Robinson, Ken. Schools kill creativity https://www.ted.com/talks/ken_robinson_says_schools_ kill_creativity Rosling, Hans. Let my dataset change your mindset https://www.ted.com/talks/hans_rosling_at_state Savulescu, Julian. The Perfect Human Being Series E01 - on human enhancement https://www.youtube.com/ watch?v=4qary81ymWk&t=993s Solomon, Andrew. Love, no matter what https://www.ted.com/talks/andrew_solomon_love_no_ matter_what Wilkinson, Richard. How economic inequality harms societies http://www.ted.com/talks/richard_wilkinson
About the author
Angelina Souren was born in the Netherlands in 1960, where she worked in tourism and hospitality in Amsterdam from 1980 onward (following a brief stint at Leyden University where she was enrolled in German language and literature). After she returned to university in her mid-twenties, now as a full-time student in earth and life sciences, she continued to serve at her old place of work off and on as well as in various part-time and temporary placements elsewhere. After graduation, she first emigrated to the U.S. for a Ph.D. in marine (biogeo)chemistry, with the aim of pursuing an academic career (for which she was already considered too old in her home country). She continued to enjoy the occasional part-time and temporary employment in other areas as well. This included several years as a legal secretary at global law firm Clifford Chance. She eventually registered as self-employed in Amsterdam, and relocated to Britain at the end of 2004. In Britain, she gained more legal experience when she took action as a litigant in person (starting a lawsuit without legal representation), the entire undertaking taking up a few years. She is a company director as well. Angelina has worked at and with various universities in several countries, both in employment and through her business. Among other things, she served as a member of the board of the Environmental Chemistry (and Toxicology) Section of the Royal Netherlands Chemical Society and as Associate Editor of the newsletter of the U.S.-based Geochemical Society.
She began writing for the public a long time ago and already achieved her first publication in a national when she was still in high school medium in her home country (about a play by G.B. Shaw). Among other things, she has written about child abuse and violence against women and children. The past few decades, she has mainly written in English, for example for colleagues in academia and for global high-end consultancies. A few fun facts about her? She flew an airplane before she learned how to start a car, and she’s had blue, pink and turquoise hair a few times.