THE General Synod will debate a motion next month that calls on the Government and professional bodies to ensure that “parents who have been told that their unborn child has Down’s syndrome will be given comprehensive, unbiased information”. This is in advance of the roll-out later this year of non-invasive prenatal testing (NIPT), a safer form of screening for pregnant women considered to have a high likelihood of bearing a child with Down’s syndrome and other uncommon chromosomal mutations.
The concern is that this is likely to result in more terminations, and a declining population of children with Down’s syndrome, where parental preferences tend to cluster around the same norms and preferences when such conditions are presented only as grave risks or harms.
As it stands, there is a liberal consensus of bioethical thought which supports selective reproductive technologies on the basis of presumptions that favour individual parental choice, and the diminished moral and legal status of human embryos and early-stage foetuses.
That is to say, since it is permissible to clinically abort foetal life, individuals ought to be at liberty to avoid giving birth to children with conditions that they would not want, or have the resources to parent.
This leaves us rather uncomfortably committed to the idea that, while we might think it regrettable, there is nothing wrong about reproductive selections that uniformly prevent the lives of particular kinds of people, or particular conditions, where no legal harm to persons is committed in the loss of them.
WHERE people perhaps neglect to look beyond the headlines, the Church is likely to come in for criticism as seeking to conservatively infringe upon the hard-won reproductive liberties of prospective mothers.
The Synod motion, however, strikes a thoughtful and well-informed balance, while gently pointing to the uncomfortable contradiction of a society that would purport to value difference while looking on as that very difference is diminished. As the Church’s national adviser on medical ethics, the Revd Dr Brendan McCarthy, has observed: “It’s difficult to say [to people with Down’s syndrome] that we will continue to value you, if people like you are going to disappear.”
I hope to see the Synod’s debate address this difficulty in good faith. In her award-winning 2016 BBC documentary A World Without Down’s Syndrome?, Sally Phillips urged people to think beyond the individual liberty rights of prospective parents, and the legitimacy of the techniques involved, to consider the broader values that we are expressing and handing on as a society in the choices that we make (News, 9 June 2017).
We do not just pass on our genes in procreation. Now that so much choice is involved, we are also effectively 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?
Perhaps the Synod can help us to consider this issue in a different way, inverting the standard notions of liberalism and conservatism, 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 a refusal to test and to choose as expressive of a radically liberal, positive, and inclusive ethical gesture of welcome and responsibility for whomever our children might be.
IN HIS remarkable 2012 book Far from the Tree, the psychologist and writer Dr Andrew Solomon detailed his research with more than 300 families in which parents had been challenged by the exceptional conditions of their children. During his interviews, Dr Solomon spoke with the mother of a child born with Down’s syndrome, who said: “I wouldn’t exchange these experiences for anything. They’ve made us who we are, and who we are is so much better than who we would have been otherwise.”
The arrival of a challenging (and perhaps unwanted) stranger, through knowing whom we become better people, is a story that every Christian will be able to identify with. If the Church can also show that there is something profoundly liberal about welcoming such strangers (and perhaps something deeply conservative about screening them out), its debate might just travel beyond the Synod walls to resonate with a wider public as well.
Dr Simon Reader is communications manager for the William Temple Foundation and author of The Ethics of Choosing Children, published by Palgrave MacMillan.