Non invasive prenatal testing
I was listening to BBC Radio 4’s ‘From Our Own Correspondent” which contained a very interesting report on a synod being hosted by the Church of England on the subject of non invasive prenatal testing and Downs. The report was candid and raised some interesting questions, some of the ramifications of which just seem to roll out like a ball of string in my mind.
To summarise, certain countries – I think Iceland and Denmark got a mention – use a form of non-invasive testing to screen for genetic abnormalities in foetuses, testing which is so prevalent that, in Iceland now, no children are born with Downs. It has been postulated that with wider use of such non invasive testing, genetic traits such as Downs might be screened out altogether from a population. What are the ethical ramifications?
Traditionally, testing for prenatal genetic abnormalities has often been invasive: the scary amniocentesis test carries its own risk of subsequent abortion, which tends to mean that mothers who have the amnio test are strongly advised to proceed with an abortion if test results indicate a tested-for anomaly.
Now, with the widespread use of non-invasive tests, the risk to the mother is nil, and so the pressure whether or not to proceed with a termination in the event of a positive test for a genetic anomaly becomes almost purely social. Non- invasive tests are great – and will doubtless be touted as a big step forward for the free mother lobby – but I doubt that freedom itself is so straightforward.
The risks shift the nature of maternal choice further from the medical sphere and plant it more firmly in the social sphere. I suspect that ‘freedom’ will move from the rights of the mother not to put herself at medical risk, to the right of the mother to do what is socially expected of her.
And, does it benefit society at large that all individuals should be the same? I personally am concerned that, because of the nature of medical advances, individuals of difference will, increasingly be tolerated only within social spheres that take a moral or political stance: Churches, or societies that embrace the totality of the human condition will probably be in a minority, although the gifts that individuals bring to such communities is immeasurable. And mothers will have to have the strength of Job to resist.
To be continued.
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February 7, 2018
The price of social conformity
Fran Macilvey cerebral palsy, Fran Macilvey, Happiness Matters 0 Comments
The price of social conformity
It seems rather sad to me that, in an age where it is becoming increasingly unacceptable to discriminate against individuals for any reason in the social sphere, neonates are not, apparently, always to be embraced in the same way.
Pre-birth testing, in which a range of genetic anomalies is screened for in early pregnancy, is not 100% reliable, but is the small percentage of ‘false positives’ an acceptable margin to eliminate non-mainstream presentations? And how much does society lose as a whole, in firstly, our acceptance of the principles of screening for their own sake, and secondly, from the loss of the gifts that accrue to society when we live with and encounter difference?
Ethical questions such as these will not go away any time soon. Meantime, we need to ask ourselves how far we value conformity, and to question how far we are prepared to accept medical screening advances that carry a sting in the tail. How far are we prepared to accept the rights of ‘society’ or ‘medical convention’ to dictate outcomes? How strong will we need to be to resist the pressures of our peers and our families to conform? And what do we lose in our insistence on ways of life that exclude individual traits that happen to occur in a minority of the population?
Is it acceptable, in an age where we pride ourselves on being more tolerant and open, to put certain families and individuals into the spotlight in this way, simply because medical screening is increasingly widespread and risk free? If we are lucky enough not to have such risks running in our families, it is easy enough to say, “Yes, of course…!” but in families where certain traits are well known and recurrent – Huntingtons, for example – is it fair to impose that kind of social expectation?
Individual choices impact on society in surprising ways, and the cumulative effect of individual choices to proceed with terminations of, say, Downs fetuses, may, indirectly cause society to become less robust, less tolerant of difference. Compare the ‘rain forest’ model of life, in which many different aspects live with and among each other, with the ‘plantation’ model, in which only certain traits are encouraged, and the others are screened out as ‘undesirable’ or ‘unnecessary’. I worry that, since we do not know all the relevant variables in this debate, we may be making decisions now that have a significantly adverse impact on social provision and attitudes in the future. If we screen out genetic traits, might we also screen out other traits that we deem less than desirable?
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