Toxic knowledge or needed information?

By  Peter Kavanagh, Catholic Register Special
  • January 29, 2007

As of Feb. 1 the Society of Obstetricians and Gynecologists of Canada and its equivalent in the United States will recommend that the rules on the use of amniocentesis change. It is the primary test used to discover if a fetus is afflicted with Down Syndrome and a number of other genetic disorders.

Under the current rules, the test is restricted to women over the age of 35. The rule change is based on evidence that the likelihood of the test causing a miscarriage is less than believed. The society asserts this is about fairness to women, the argument being that women under 35 should have the same option of deciding to abort a fetus with Down Syndrome or other genetic disorders as older women. The reality behind the fairness claim is that about 20 per cent of Down Syndrome cases are missed under the current rules and that 80 per cent of the Down Syndrome babies born are born to women under 35.

There are a number of reasons to regret and object to this rule change but perhaps a key one is the suggestion by members of the medical community that this change is not about morality. Instead, it is simply about fairness and good medical practices.

As if morality can or even should be separated from good medical practices or that fairness is simply about information.

Far too often the donning of the white lab coat is seen by scientists and non-scientists alike as the equivalent of proclaiming universal objective truth not open to question on moral, religious, ethical or even simply sound social policy grounds. Yet, it seems clear, especially when dealing with the biological or life sciences, that distinguishing between truth, perception, bias or prejudices is not just possible but essential. After all, what else explains the entire industry of bioethicists commenting on medical decisions and choices daily?

Dr. James Goldberg of the American Society of Obstetricians and Gynecologists, one of the drafters of the new rule, says he is not sure that the change will result in more abortions. But surely he is equivocating? If not, what is the point of the test?

When it is administered to women over 35 it is because the risk of a Down Syndrome baby is greater the older the woman. It is the risk of the possibility of a Down Syndrome baby being born that is being assessed by the test. And in today's society, a risk determined is a risk to be eliminated. Administering the test to all pregnant women is in aid of eliminating the risk entirely.

The President's Council on Bioethics in the United States refers to this type of information as toxic knowledge and perhaps with good reason. The reality is that when advised that the fetus is likely to have Down Syndrome, in most cases the result is abortion.

Naturally, no sooner had the proposed rule change been announced than the Canadian Down Syndrome Society announced a campaign of opposition. Krista Flint, the executive director of the society, put the issue starkly: "Just because we can, doesn't mean we should." The society worries that the ultimate aim of the testing and the rule changes is the elimination of Down Syndrome cases from society. Think of it as eugenics, one fetal test at a time.

There is good reason to believe that the CDSS is not overreacting. At the root of all fetal testing is an unexpressed belief system about what constitutes normal life and what physical and mental qualities lead to a sufficient quality of life. It is a stance on what a human being should be. The worry that these standards will get more and more rigorous as time goes on can't be dismissed on the basis that doctors are simply providing prospective parents with the information necessary to make informed choices.

When the medical community asserts it is simply being fair to women under 35, they have a point. Bringing to term a "deformed" fetus is seen as unfortunate in society at large, and disabled people are seen as having a diminished quality of life. The pressure to not give birth is subtle, intense and evident through all of society. There is a moral and philosophical underpinning to changing the rules. It is not simply a matter of neutral science.

(Kavanagh is a senior producer at CBC Radio in Toronto.)

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