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From Genes to Values: Shifting the Designer Baby Debate

07/08/2017 10:06

Following the latest, widely reported developments in gene-editing technology, Simon Reader assesses the state of the ‘designer baby’ debate.

The news last week of the latest breakthrough in gene-editing technology was met with global media coverage, along with commentary on the familiar trope of designer babies and disquiet over the ethics of choosing children. Scientists have now successfully developed techniques to remove genetic mutations from human embryos that would cause heart failure in future persons, a procedure with obvious therapeutic benefits that also promises applications in the case of other potentially harmful mutations.

As ever, upon news of developments in this field of biotechnology, moral questions are raised anew about the prospect of designing or choosing the kinds of children we have in the future, with warnings that ethics is being left dangerously far behind. Given that we have been contemplating the possibility of so-called designer babies for decades now, you could be forgiven for wondering why there is still this perceived lag between the development of the technology and our moral assessment of it.

Reproductive bioethics engages particular kinds of moral questions where the existence or non-existence of future persons is at stake. If we accept that is it permissible to destroy, manipulate and choose from among human embryos (as is the legal status quo), then it is difficult to say that choices spelling non-existence for particular kinds of embryos are harmful. That is, if embryonic and early stage foetal organisms are not morally considerable, we cannot say it is bad for particular embryos and foetuses that they are not selected to be brought to term as human persons. This leaves us committed to the idea that, while we might think it regrettable, there is nothing wrongful about reproductive selections which uniformly avert the lives of particular kinds of people, or particular conditions, where no harm to persons is committed in the loss of them.

In last year’s award-winning BBC documentary, Sally Phillips invited us to consider A World Without Down’s Syndrome, the prospect of a future society where Trisomy 21 is all but eradicated by virtue of realisable parental preferences not to have children with the condition. It’s really not so fanciful, given the very high percentage of terminations that are undertaken upon prenatal diagnosis of Down’s. Indeed, it’s reported that in Iceland, where almost everyone screens for Down’s Syndrome, 100% of positive diagnoses now result in termination. While liberal societies are absolutely committed to the procreative freedom of individuals to make informed reproductive decisions regarding their own bodies, should we be indifferent to a basically eugenic outcome when these decisions cluster around the same norms? And where such societies purportedly abhor social discrimination in principle, can we seamlessly and consistently exercise discrimination in reproductive practice simply because the methods for doing so are morally permissible?

Phillips’s documentary urges us to think beyond the moral legitimacy of the techniques involved, and the unquestioned individual liberty rights of prospective parents, to consider the broader values we are expressing and handing on as a society in the choices we make. Perhaps it is not surprising, when predominant scientific accounts of human agency ordain that human beings – or their ‘selfish’ genes – are motivated simply by the renewal of themselves through sexual reproduction, that we may have lost sight of the fact that reproduction also fundamentally renews the world of human society and our values with it. We don’t just pass on our genes in procreation; now that so much choice is involved, we are also purposively passing to future generations an ideological determination of what (and who) we value in life. When those choices and choice regimes collectively perform the broad exclusion of certain kinds of people, or of people possessing certain kinds of traits or ‘imperfections’, what does this say about us and what we value?

In the light of new technologies of reproductive design and selection, we are moved to experience this tension between the now practicable parental wish to have a child best suited to go well in the world, and a social wish that we do not as a society become less diverse and less hospitable as a result. The ongoing unease over ‘designer babies’ I think attests, in part, to the fact that we have not really had the debate in these terms, addressing this tension in good faith. One effect of doing so might be to flip the traditional notions of liberalism and conservatism on their heads, where the former is associated with creating designer babies and the latter with refusing reproductive choice. That is, we might instead think of selective reproduction as profoundly conservative where its aim is a child’s conformity with current norms of ability, appearance and achievement. We may also then come to think of the refusal to choose as expressive of a radically liberal, positive and inclusive ethical gesture of welcome and responsibility for whomever our children might be.

In Phillips’s documentary, she spoke to one mother who refused prenatal testing not because she didn’t want to know, but in order to keep the information from medical professionals who she felt would harass her to terminate if the result was positive for Down’s. However we frame these debates over the years and decades to come, it is imperative that mothers should be free from coercion to relate to their own bodies and the newcomers they may bear in the way that they choose.

Simon’s book, The Ethics of Choosing Children, is published by Palgrave Macmillan this September.


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