Jackie Leach Scully calls for a wide-ranging discussion of the scope and nature of human genetic variation and diversity.
Readers of Impact Ethics will have noticed the recent surge of interest in the new technology of gene editing. There was last week’s high profile International Summit on Human Gene Editing, organized by the UK’s Royal Society, the US National Academy of Medicine, and the Chinese Academy of Sciences. Meanwhile, the UK’s Nuffield Council on Bioethics has launched a major project on gene editing. And these are only two of many other meetings, statements, and events.
So far, most public interest has been generated by gene editing’s potential clinical uses. The hope – or hype – is that gene editing will enable us to eradicate serious diseases and disabilities. Families affected by devastating disorders are often very clear in that they want research into editing technologies to push ahead, to remove or at least reduce the chances that the disorder will be passed on. The hope of getting rid of devastating hereditary neurological disorders, cystic fibrosis, and so on, may well be worth both the economic and moral investment in gene editing, or even of changing the germline.
If gene editing’s promise is fulfilled (and some of us have been around long enough to remember just how often a biomedical promise hasn’t panned out), it will present formidable ethical issues. It’s worth remembering here that these concerns aren’t unprecedented: the ethics of genetic technologies has been under scrutiny since the landmark Asilomar Conference on Recombinant DNA in 1975. We actually have decades of philosophical discussion to help us examine how safe gene editing must be before it can be used clinically, whether germline modification of human genes is ethically acceptable, why globally harmonized regulation is necessary, and so on.
Important as these questions are, however, an exclusive focus on them risks foreclosing a broader discussion of even more fundamental ideas and values about the kind of people a society might want to have, and who gets to decide that. Most fundamental of all are the questions of what “a good life” is and how best to achieve it.
This broader discussion is hampered by the lack of philosophical, social, or political nuance in the categorization of human bodily variation. It’s one thing to take genetic conditions that cause immense suffering for individuals and families and try to eradicate them. It is quite another to treat all genetically-based variation as if it were that unambiguous. Disability scholars and rights activists, alongside some bioethicists, have argued that variations in body form and function needn’t always be impairments. A particular variation may be entirely compatible with having a good life, and that possibility needs to be examined closely before assuming that the variation is a problem in need of a gene technological solution.
Gene editing clearly holds the potential to improve human lives in practical ways. It also offers something more abstract but, to my mind, equally important: the chance to think deeply, responsibly and imaginatively about the boundaries of human bodily diversity. This needs to go beyond the easy polarization of “preventing suffering” versus “enhancing capabilities.” Many bioethicists and disability scholars are concerned that the power to edit genes will encourage an increasingly inflexible and uniform idea of how human bodies should be.
If it really does become possible to edit genes easily, it will be essential to reach some kind of consensus on which forms of variation are constitutive of normal human diversity, and to be open to the inclusion of some variations, currently considered impairing, under that heading.
A democratic consensus on these boundaries will need input from affected individuals and families, patient advocacy groups, and disability activists, alongside the more familiar bioethicists, scientists, and policy makers, as well as a variety of publics. Arriving at a consensus will inevitably take time, effort, and investment in resources. But the widest and most open conversation across a range of interests is essential to ensure, as best we can, that our uses of gene editing are morally acceptable.