William Reville: Eugenics is wrong about Down syndrome

How do people with Down syndrome feel when they hear predictions of the elimination of their kind?

Down syndrome births account for about one in every 546. Photograph: iStock

Down syndrome births account for about one in every 546. Photograph: iStock

 

Eugenics as practised in the first half of the 20th century earned a very bad name. However, eugenics is now reasserting itself in a new form, sometimes called new eugenics. Proponents of new eugenics claim that, unlike the old eugenics, new eugenics is voluntary, ethical, respectful of human rights and based on correct science. Nevertheless there are reasons to fear that new eugenics is not as different from the old eugenics as supporters claim.

Eugenics (from the Greek meaning “good birth”) was a movement to improve the human stock by promoting selective breeding between people of superior qualities. Eugenics was widely popular in Europe and America in the early 20th century and enthusiastically promoted by the liberal-left intelligentsia. However, the eugenics movement quickly deteriorated, incorporating bogus “race science” and sterilisation of various categories of people deemed medically “unfit” to procreate. Eugenics was enthusiastically adopted by the Nazis and ended up in the crematoriums of the death camps.

A prominent promoter of new eugenics, Julian Savulescu, a professor of practical ethics at the University of Oxford, says we have a moral obligation as a species to enhance ourselves. New eugenics aims to produce the highest-quality babies by using modern genetic and reproductive technologies and by widespread screening of foetuses for defects.

At the moment there is little or no capacity to repair foetal genetic defects, although repair technologies are under rapid development, and most women abort foetuses diagnosed with a problem by prenatal screening in countries where abortion is readily available.

I have no problem with new eugenics proposals to use molecular biology to repair/delete genetic damage in the embryo but I do have an ethical problem with the selective abortion of foetuses carrying a disability.

Down syndrome babies

Consider Down syndrome as an example. Down syndrome results from an error in cell division at conception that produces an extra chromosome. People with Down syndrome are usually in the mild to moderately low IQ range. About 15 per cent of Down syndrome babies die in their first year, usually from heart conditions, but after that prospects greatly improve.

Heart, hearing and eye problems are common but improvements across health, education and community sectors have reduced the range of issues faced by Down syndrome children and their parents.

The average life expectancy of a Down syndrome person is now in the 50s. It can be diagnosed in the early foetus by prenatal testing. Most women, in countries where abortion is freely available, choose to abort the unborn diagnosed Down syndrome baby (Tim Stanley, The Telegraph, January). In Denmark, for example, 98 per cent of prenatally diagnosed Down syndrome foetuses are aborted, and it is predicted that this practice will eliminate the congenital disorder within 30 years, a prediction that was positively received by the Danish public.

Evolutionary biologist Richard Dawkins has said it is immoral to carry on with a pregnancy if the mother knows the foetus has Down syndrome. “Abort it and try again,” he advises. This prenatal screening assumes that people with the syndrome lead painful and burdensome lives and are better off not being born. This assumption is wrong.

The majority of Down syndrome babies can look forward to leading happy and contented lives into their 50s and 60s. A paper, Self-Perceptions from People with Down Syndrome by Brian Skotko and others (American Journal of Medical Genetics, September, 2011) noted that almost 99 per cent of people with Down syndrome report they live happy and fulfilling lives. About 90 per cent said they like how they look. Touchingly, the people surveyed encouraged parents and healthcare workers to love and value Down syndrome babies, saying they have similar hopes and dreams as everyone else.

Down syndrome births account for about one in every 546. There are about 7,000 such people in Ireland. How do they feel when they hear predictions of the elimination of their own kind by identifying all future Down syndrome individuals as foetuses and killing them? Do they not justifiably feel that their own lives are being judged to be of little or no value?

There are aspects of new eugenics that are laudable but this particular prenatal screening reaction is not such an aspect.

William Reville is an emeritus professor of biochemistry at UCC. http://understandingscience.ucc.ie

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