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Deselecting and selecting our children
Is a society without disabled citizens really a perfect society?
Just when some scientists are on the cusp of discovering a drug for treating people with Down syndrome, others are busy refining the technology which will make them disappear completely. A feature in the New York Times Magazine recently highlighted the work of Alberto Costa, a 48-year-old physician and neuroscientist at University of Colorado-Denver School of Medicine. He has started a clinical trial on young adults to see if the drug memantine helps them become “smarter”. It is the first randomized clinical trial ever to take a drug that worked in mice with Down syndrome and apply it to humans.
If successful, it could be of enormous help for the 6,000 children who are born with Down syndrome each year in the United States. But Dr Costa faces an uphill battle for funding.
Down syndrome children are being aborted so fast that funding bodies think that there is little point in looking for a cure. “The geneticists expect Down syndrome to disappear,” Costa says, “so why fund treatments?” He fears that new quick non-invasive diagnostic tests will lead almost all women to abort Down syndrome children.
“It’s like we’re in a race against the people who are promoting those early screening methods. These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.”
Current estimates are that in North America around 90 percent of unborn babies with Down syndrome are aborted and the same is true in European countries. A report from Denmark characterized “eliminating Down syndrome” (sic: people with Down syndrome) as a move towards creating a “perfect society”. The ethics issues prenatal screening raises will only become more prevalent as the range of tests expands, they become safer for the pregnant woman and cheaper and easier to use, and many are presented as routine precautions in medically managing a pregnancy.
The most recent announcement concerning a prenatal test is identification of a baby’s sex at seven weeks of pregnancy. This raises fears of sex selection, which many people regard as unethical, at least when not carried out for serious medical reasons.
As we can see in India and China, where sex selection through abortion and infanticide has resulted in many millions of missing girls, the decisions of individuals have a cumulative effect on society, itself. For instance, many young men in those countries cannot find a wife and abuse of women is augmented.
The recent riots in England also provide an analogy: one person acting aggressively or a small group of people rioting is different in kind, not just degree, from a very large number doing so, although both situations may raise many of the same ethical and legal issues. The same is true of individuals “choosing” their children. So what limits should we place on their doing so in the interests of society and the harmful impact it would have on our shared values?
Widespread, publicly endorsed and paid-for pre-natal screening to eliminate people with certain conditions, for instance, Down syndrome, implicates, among other values, those of respect for both individual human life and human life in general; and respect for “disabled” (differently-abled) people, both as individuals and as a group.
The implementation of negative eugenics with respect to disabled people is the unavoidable collective impact of these screening-based decisions. As harsh as the language is, we can be described it as a “search and destroy” mission to wipe out certain groups of people.
And where might society supporting such screening lead? For instance, what would endorsing a belief that a society without disabled people can be considered “perfect” say about us? What kind of society might it result in?
We have unprecedented new technoscience powers and history teaches us that the use of science in the search for human perfection has been at the root of some of the greatest atrocities in terms of respect for human life, individual humans and human rights.
Offering prenatal screening as a routine procedure communicates a message that a woman is conditionally pregnant, until she is told there is “nothing wrong” with the baby -- until the fetus is certified as “normal” -- or it is the “right sex”. This approach contravenes our concept of parental love – that it is unconditional - that we love our children just because they are our children.
The societal level message we will unavoidably be delivering is that “We don’t want you in our society unless you measure up to a certain genetic or other standard. You are only a potential member, until you’ve passed the admission test that we are willing to pay for with our tax dollars and implement”.
And what about the “everyday ethics” involved in screening? Far from all physicians are competent to obtain informed consent to these tests and carry out follow up genetic counseling.
For many reasons, physicians tend to be very pessimistic in predicting the impact, for instance, of Down syndrome on the child and usually see no possible benefits from having such a child – they can be astonished to learn of the joy, bonding and love such a child can bring to a family.
One cause of their ignorance is that the people who could inform them otherwise are silenced. As Audrey Cole, a remarkable advocate for the rights of disabled people and the mother of a 47 year old man with Down syndrome wrote to me, “Our voice [against eliminating people with Down syndrome] will, inevitably, be dismissed as the whinings of a ‘special interest’ group. I have never been able to understand why my feelings as a parent of a wonderful, caring, gentle man can be so easily dismissed as “special interest.” I am frightened of the times that seem to be coming.”
And, how will women who refuse screening be regarded? What will be the impact on families who “choose” not to abort when “abnormalities” are discovered? Will they be seen as socially irresponsible? That belief, in itself, creates a climate of coercion not to proceed with the pregnancy.
Perhaps, in deciding about the ethics of prenatal screening we should recall it’s true for all of us that “the well are only the undiagnosed sick” and we are thankful that no one “deselected” us.
Margaret Somerville is director of the McGill Centre for Medicine, Ethics and Law in Montreal.
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