Deselecting?

I support prenatal testing.  Informed parents make better parents.  But the use of prenatal testing can test the ethics of many.  Is the quest for a "perfect" baby what we really want?

My perfect boys

Perfect!

Here’s a recent Danish headline: “Plans to make Denmark a Down syndrome-free perfect society.” The Danes want to promote aborting fetuses with Down syndrome, so their society will be free of such people around 2030. One bioethicist describes it as a “fantastic achievement.”

At least the Danes are raising this issue. In North America, it’s estimated that more than 90 per cent of unborn babies with Down syndrome are aborted.

The ethics issues that prenatal screening raises will only increase as the range of tests expands, they’re safer for the woman, cheaper, easier to use and presented as routine medical precautions. But not all tests have medical goals. The latest – identification of a baby’s gender at seven weeks of pregnancy – raises fears of sex selection, which has resulted in millions of missing girls in India and China. These “deselection” decisions affect society itself. Many young men, for instance, can’t find a wife.

The British riots provide insight regarding actions by individuals that cumulatively threaten society: Unlawful assembly and rioting are such crimes. The same can be true of individuals “choosing” their children. So what limits should we place on their doing so in the interests of society?

Widespread, publicly endorsed and paid for prenatal screening to eliminate people with Down syndrome implicates values of respect for both individual human life and human life in general, and respect for disabled people. Collectively, these decisions implement negative eugenics regarding disabled people. It’s a “search and destroy” mission to wipe them out.

What kind of society might result from endorsing a belief that a society without disabled people is “perfect?” The use of science in the search for human perfection has been at the root of some of the greatest atrocities.

Offering routine prenatal screening sends a message that a woman is conditionally pregnant, until she’s told there’s “nothing wrong” with the baby – the fetus is certified as “normal” – or, even, is the “right sex.” This contravenes the value that parental love is unconditional – we love our children just because they’re our children.

A societal-level message is: “We don’t want you in our society unless you measure up to a certain standard. You’re only a potential member, until you’ve passed the admission test we’ll pay for with our tax dollars.”

And what about the “everyday ethics” of screening? Many physicians are not competent to obtain informed consent to all prenatal tests and carry out follow-up genetic counselling. Physicians also 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.

People who could inform them otherwise are often silenced. Audrey Cole, the mother of a 47-year-old man with Down syndrome, writes: “Our voice 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? Will families who “choose” not to abort when “abnormalities” are discovered be seen as socially irresponsible?

In deciding about the ethics of prenatal screening, we should recall that, for all of us, “the well are only the undiagnosed sick.”

Margaret Somerville is the founding director of the Centre for Medicine, Ethics and Law at McGill University.

Be gentle.