Welcoming, not screening out

by
26 January 2018

The Synod debate on the Down’s test could send a powerful message, says Simon Reader

PA

People with Down’s syndrome and their families protest outside the Houses of Parliament, in 2016, against the introduction of pre-natal screening

People with Down’s syndrome and their families protest outside the Houses of Parliament, in 2016, against the introduction of pre-natal screenin...

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.”

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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.

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