Down’s, dwarfism and eugenics

I highly recommend Amy Harmon’s story in today’s New York Times on efforts by parents of kids with Down syndrome to educate medical professionals and expectant couples about the good lives many folks with Down’s lead. With prenatal screening for Down’s and other genetic conditions becoming more and more pervasive, activists are trying to get out the word that abortion should not be an automatic choice.

A major theme of my book on dwarfism, “Little People,” is the degree to which our culture remains profoundly uncomfortable with difference — and what we would do about difference if we were offered the chance to eliminate it. Within the dwarf community, there’s a sense that several of the most common types of dwarfism could be routinely screened for at some point in the not-too-distant future. If couples are told that their child, as an adult, would be four feet tall, with disproportionately short arms and legs, and would walk with a waddling gait, what would they choose to do?

In most cases dwarfism, which does not affect mental development, is not nearly as debilitating a genetic difference as Down syndrome. (Although, to be fair, Down’s families assert that the condition is often not as serious as it’s generally portrayed.) Yet plenty of people would choose abortion. More important, that attitude is more pervasive among medical professionals than among prospective parents.

One of the people I interviewed for “Little People” was the late Dorothy Wertz, a psychiatrist who was affiliated with the Eunice Kennedy Shriver Center in Waltham. In the late 1990s, Wertz conducted a study of about 2,000 people — 1,000 genetics professionals, 500 primary-care physicians and 500 parents. Among her questions: If achondroplasia, the most common form of dwarfism, were detected in utero, would you opt for an abortion? Here are the results:

• Genetics professionals, 57 percent
• Primary-care physicians, 29 percent
• Patients, 24 percent

I’ll bracket this with two more of Wertz’s findings. For Down’s, the breakdown was geneticists, 80 percent; physicians, 62 percent; and patients, 36 percent. For a genetic predisposition to severe obesity, it was geneticists, 29 percent; physicians, 13 percent; and patients, 8 percent. Thus, dwarfism was right in the middle. And the obesity finding, I think, is significant in that it reveals an underlying aversion to virtually any kind of difference. It’s no wonder that activists often refer to genetic screening as “eugenics.”

The problem, of course, is that when expectant parents receive a diagnosis of a genetic condition in utero, the first thing they are told to do is to schedule an appointment with a geneticist — a person who, statistically, at least, is far more inclined to think they should terminate the pregnancy than the parents themselves. The parents, of course, have a right to choose, but it should be an informed choice. And an informed choice involves knowing something about the real lives of people who have that genetic condition.

With dwarfism, at least, attitudes may have changed for the better in recent years thanks to the “normal” roles played by actors and actresses such as Peter Dinklage and Meredith Eaton, and, most notably, by the Roloff family, stars of the TLC reality series “Little People, Big World.”

But the threat posed by a future of cheap, pervasive genetic screening, coupled with a social expectation that we’re all entitled to the perfect child — whatever that might be — makes stories such as Harmon’s, and the work of the parents she portrays, more important than ever.