Different is Beautiful

We are nearing but not yet at the end of the dark ages of medicine. Not so long ago, the general physician was first and foremost a diagnostician. That person named the ailment, defined its effects, and sat with the patient who lived through the course of the condition, or didn't.

Nor is it that different today, at the cutting edge of medical science. In the areas of genetics, molecular biology and cellular mechanics-our ignorance greatly exceeds our knowledge.

At best we can diagnosis but cannot change the hand nature has dealt. In this new age at the end of the old era of medicine, our question is the extent to which we should live with differences inherent in our genetic profiles . . . or die as a result of their reading. This is not simply a medical conundrum but more centrally a social concern.

Mapping the human genome is rather like mapping a world we can not see or walk through. There are patterns that we can perceive but a reality that can not be understood without experience. And that is what we are doing with genetics, seeing the map of a person's genetic pattern as a reality we can not manipulate and do not ourselves experience. The problem is, for us all, that the effects of that imagining are vast. Huntington's disease is a classic example. A genetic test says that, yes, you'll get the disease as a mature adult . . . or you won't. If you have the profile you have thedisease and it will, at onset, be progressive and inexorable. But Huntington's disease is itself an anomaly, it's rarely this clear with genetic disorders. Mostly, genetic testing doesn't tell you when the onset will be, or how severe the condition might become. There is, for example, Neurofibromatosis, a condition in which nodules develop on the skin or within the body itself. In its extreme manifestation we have Protesus Syndrome, and the Elephant Man like appearance that gave the 19th century Elephant Man, Merrick, his grotesque features.

If a fetus tests positively for Neurofibromatosis the test says the child to be born will be different. How serious that difference will be we won't know until it matures. We can't simply change that gene, at least not yet, to give the parents the desired, so called "normal" child. All we can do is say, like doctors of old, "The condition is there." And then the decision has to be made whether to permit the child to be born, or not.

A recent study showed that women in the USA accept the possibility of a spontaneous abortion resulting from amniocentesis as preferable to having a child with Down syndrome. That is, the chance of loosing a fetus is preferable to having an infant who is born with this difference. I suspect the results would be the same in Canada. As most of you know, amniocentesis itself will soon be outdated and replaced with genetic testing.

Now the tests-however they are done-don't tell us much except that the genetic marker is present. They don't speak to the severity of the condition they predict. Nor, as you all will note, do they speak of the love the child will give its family and friends if it is born. It says, loud and "different", and for some this is more than enough reason to abort.

Let me point out again that while the Down syndrome community is at the forefront of the genetic controversy you folks aren't alone. In Toronto several years ago, a bioethicist at my hospital, The Hospital for Sick Children, told me the greatest problem genetic counselors were facing was not with Down syndrome, or other disorders of similar severity. It was with the test that told the parents their infant would have a harelip and a cleft palate. These are surgically correctable conditions but despite this, prospective parents were choosing to abort rather than bring these children to term. Now if someone had said a child with Spinal Bifida who could never walk would be so restricted they couldn't be good parents . . . the counselors would have understood that. And they understood seeking an abortion for a fetus with Tay Sacks, or with Down syndrome. But a harelip?

Across the last century we have learned to value normalcy above difference, and beauty above all. This is the history of the euthanasia movement, and the discrimination that persons in your community have faced. We're talking about "difference," about "ugly," about "them". Genetics is fueling a new discrimination that is eugenic in nature. We've returned to an early 20th century vision that says, "do away with the different" and celebrate the lovely, irrespective of the person inside.

Martin Pernick tells this tale in frightening detail. It is scary because it led quite directly to the eugenic programs of the USA, Canada, and Nazi Germany. It directly resulted in the murder of tens of thousands of people who were different. And it is frightening because it is so contemporary.

Our grandparents were as proud of their science as we are of our own. It is only in retrospect that the knowledge of the doctors of 1910 and 1920 seems so limited.

On November 12, 1915, in Chicago's German-American Hospital, a woman named Anna Bollinger gave birth to a seven-pound baby boy. The surgeon who headed the staff, Harry J. Haiselden, was called in. The child had multiple physical anomalies, a range of deformities, including a membrane blocking the lower bowel. Surgery would have corrected the latter but not the other differences-mostly physical-and he urged the family to forego life-saving surgery and let the infant die. Afterwards, Haiselden revealed that he had permitted many other infants he diagnosed as "defectives" to die during the decade previously and, over the next three years, he withheld treatment from or actively speeded the deaths of at least five more abnormal infants.

These infants had physical abnormalities. Haiselden was convinced he was right. Emboldened by his ability to make these choices, he later wrote a six-week-long series of articles for William Randolph Herst's Chicago American newspaper on his views. He took every opportunity to espouse his views on killing or letting die "defective" children. Now, Haiselden wasn't the first physician to advocate euthanasia, but he was the first to publicly announce his actions. And he was almost certainly the first to write about it in the newspapers, and argue to society-at-large that "imperfection" was something to be destroyed. Haiselden's work fitted into the growing vision-especially after World War I-that "defectives," persons of difference, were too expensive to keep around.

The move against difference led to the USA case Buck v. Bell in which the state's right to sterilize women without their consent was granted. Degenerates who bred degenerates were too costly for the 1920s, and in this case, a Canadian version was later enacted, set the parameters of what society would allow to exist within our midst.

The Haiselden story doesn't end here, of course. People in other countries, especially in Germany, were paying close attention to what was happening in North America after World War I. Germany had a lot of rebuilding to do and they had a problem with self-esteem and the perfect Aryan person was the ideal that was held up for all to aspire to. Why not do away with the expensively defective, the different? Under the Third Reich, the policy was set, based in part on the North American experience. They took the North American argument to its logical conclusion, the concentration camps of World War II.

After World War II there was a general revulsion against the crimes of the Nazi regime. Researchers went and found Carrie Bell-the woman sterilized in the famous court case-and discovered she wasn't "defective" after all. She had merely been uneducated and illiterate and thus seemed well, different. A daughter she had before being forcibly sterilized was "normal," too. Maybe, folks said, we were too hasty. Maybe this isn't a good idea.

In the USA the right to forcibly sterilize woman against their wishes was repealed and in Canada we followed a similar history, first permitting and then rejecting forced sterilization as a means of social and economic engineering by repealing our own Buck vs. Bell.

There is, of course, a parallel history here, one specific to your community. Dr. Pueschel, who is here today, has written about discrimination against Down syndrome people by the medical community in an elegant and telling way. Through the 1980s test cases centred around infants with Down syndrome like Baby Ross and Baby K, infants whose physicians, and sometimes whose parents, believed they were genetic mistakes.

With the coming of amniocentesis, and the knowledge of genetic potential, the fight between advocates of normalcy and defenders of beauty entered a new phase. It's cleaner to prevent a birth than to accept the difference that may result. At first, this wasn't seen as an ethical problem by most. As we learned more about genetics, and about the human genome, the eugenics that flourished early in the century was resurrected.

In June 1993, Science Magazine carried a piece called "Eugenics Revisited". The writer, John Horgan, said this wasn't something to be worried about. It wasn't the OLD eugenics because . . . the science was so much better. Now, folks said, and still say, "Don't worry. Our science is vast. We know what we were doing." I hear this a lot. When I do radio shows or write a piece for the newspapers, or the academic journals, folks keep saying, "what's your problem?" Our science is vast. We've got a handle on these things. What's wrong with being normal, with wanting our children to be healthy? Fanatics like you are out of step.

But we DON'T know what we're doing. We ARE ignorant. And so I'd like to take a moment to talk about our ignorance.

Tom Koch, Ph.D. is adjunct professor of gerontology at Simon Fraser University, a research associate in bioethics at The Hospital for Sick Children, Toronto, and a member of the CDSS Professional Resource Council. He is the author of a number of books and articles, including The Limits of Principle, that considers the allocation of graft organs for persons of difference. For a list of his writings: