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You would be forgiven for thinking that the most important and difficult ethical questions that have arisen as a result of advances in genetics this century centre around insurance policies. Here in the UK at least, practical problems such as whether insurers should know of an individual's Huntington's disease test result seem to attract the most attention from policy makers and the media. But the sequencing of the human genome has brought with it dilemmas of a significantly more troubling nature that will have a profound impact on our understanding of healthcare and human nature that have yet to be adequately addressed.
These dilemmas arise because of our new ability to choose the genetic characteristics of future people. We have already experienced widespread genetic screening of fetuses for diseases such as cystic fibrosis and Tay Sachs disease, and we know that one's risk of developing late-onset disorders including some types of breast cancer and Alzheimer's disease can be fairly accurately assessed. These developments progress slowly and sporadically, and new techniques that enable such selection to take place without the need for abortion have yet to enter 'mainstream' health services. Consequently, ethical concerns are frequently addressed either with reference to one particular disease or screening programme, or in the context of the abortion debate, rather than from a longer term, more reflective perspective.
From Chance to Choice is a notable exception. Its motivating premise is that our new genetic knowledge has significant implications for our basic principles of justice. Previously, discussions of justice have considered equal access to resources or the equal distribution of resources as alternative interpretations of what egalitarianism requires. In this book, the authors expound 'the brute luck view' of equal opportunity which states that one should not have lesser opportunities because of matters that are unchosen, or not within their control. A fairly uncontroversial example might be that children born into families that cannot afford to pay university tuition fees ought to be offered scholarships. But applied to genetics, the authors come up with the much more controversial suggestion that as well as distributing resources and opportunities fairly, there should also be a fair distribution of person-constituting characteristics. They focus primarily on genetic characteristics linked to illness rather than social skills or behavioural traits, formulating a surprisingly plausible policy of allowing every individual to be free of 'disease genes', while simultaneously deflecting the charges of stigma and discrimination that are inevitably aimed at anyone who suggests that some forms of suffering might be best avoided. Thus, for the authors, an individual born with cystic fibrosis ought to receive treatment to cure this disease and restore him/her to the state of the 'normal competitor'. They suggest that only when we are able to cure all genetic conditions, ideally before birth, will we be able to ensure that people are truly born equal.
The book spends considerable time on the related questions of the distinctions between health and disease, and between treatment and enhancement. This is no doubt because one of the four authors is responsible for one of the most comprehensive analyses of health and normality in recent years. However, his work really deserves either its own book, or a shorter exposition in this one. The sections on these distinctions are also coloured, to a non-US reader, by an underlying attitude about the way in which healthcare is and should be delivered. You get the feeling that the authors ignore valid philosophical arguments because of the pressing requirement to fit their policy suggestions into the US healthcare framework.
In the second half of the book, the authors tackle the intriguing philosophical problem of reproductive choice and causing harm to future generations. It is often suggested that the negative effect on individual children of their parents' failure to use prenatal genetic tests cannot be calculated, since any child with a genetic disorder would necessarily not have been born had such tests been used. Instead, a healthy embryo with a different set of genes would have been conceived or implanted. The authors wade their way through this messy argument and emerge at the other side with a convincing set of policy recommendations to which I can't do justice in a short review.
A noticeable feature of almost all 'popular' science books that concern themselves with human genetics is the tendency to pose a series of dramatic ethical questions at the end of a chapter, without offering an answer to any of them. From Chance to Choice is one of few books that sets out to look deep into the heart of these dilemmas, to understand why they arise, and to suggest answers based on clear and thorough reasoning. As such, whether you agree with the final policy recommendations or not, it is a vital and important addition to the morass of frequently superficial 'popular' writing that is spreading its way across genetics. Tor Lezemore works in the bioethics field for the Nuffield Council, the UK's only independent national bioethics council. She has a Philosophy degree from the University of Cambridge and an MA in Medical Ethics and Law from Kings College London.
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