By Dan Kennedy • The press, politics, technology, culture and other passions

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.

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  1. Jeff W.

    Dan, I think there’s an omission in this post. You give the numbers for Wertz’s study but don’t say what they actually measure. I.e., your question is phrased “what would you choose?” and your answer is “57 percent,” kind of a non sequitor. From context, I assume they are measuring the percentage of people who said they would abort if X condition was discovered pre-natally?

  2. Dan Kennedy

    Jeff: Good grief, yes. Now fixed. Thank you.

  3. The short Short

    Sigh! I’m a 62 year old Achondroplasic, and no matter what the yard stick is used, I’m considered to have been very successful in my life. YET, I would still make the same decision my wife and I made before we were married, NOT to have children, even now! To prove this (if that is needed) I recently was asked to visit the parents of a six week old Achon girl. The minute I set eyes on that baby Achon, my mind just screamed, “Oh no, not again!” Yet, I went ahead and told them what a wonderful life their daughter WOULD have.Some friends of ours MAY give birth to a Down’s Syndrome baby. All the tests are showing that to be the case. I just hope they decide to stop it in the early stages.YES society is beginning, BEGINNING to be educated and far more positively aware of disability. Society IS now beginning to accomodate them and their needs. BUT, even today, we hear stories of parents being told they have given birth to circus fodder (dwarfism) and horror stories about the future of their Down’s child.YES, parents DO do a fantastic job with these children, and their rewards are great, BUT, one has to ask, “At what cost?” Cost to themselves, their own lives AND the lives and position of any older siblings.And at the risk of sounding slightly religious, think on termination as doing the ‘child’, the ‘spirit’ etc, which would have occupied that body or mind a favour. They can then, hopefully, be born into a ‘more acceptable’ body next time.

  4. birthingjourney

    Thank you for your post. I am a homebirth midwife in California. I present all the recommended prenatal tests and procedures to my clients so that they can make informed choices. We often have thorough discussions regarding the MSAFP screen (Triple screen) done at 16 weeks gestation. This is one of those genetics tests that screens for Downs among others. OB/Gyns here do not discuss nearly as much as we do with clients about the pros and cons. Mostly they encourage the test and parents do it blindly. I think that is sad and irresponsible. I think parents need to examine their deeply held beliefs around the perfect child and work through that as an issue before making rash blind decisions.

  5. Lizard Eater

    It’s such a difficult issue. I am glad that I never was faced with making a choice. I have wondered, if we had known ahead of time, (but not “knowing what we know now”) that Little Warrior would have cancer, would we have terminated? wrote that last September, but still, I have no answer. Before, I would have agreed with the previous poster that to terminate would release her soul to be born into another body. But now, the thought of her not being born … dreadful.

  6. Bill

    I have to reply to Short Short here (and I happen to know him).I think he is WAY off base. I also am an adult with dwarfism, one of the more physically challenging types, and I was frankly shocked by his reaction to the achon child. He chose not to have a child, fine. But his “vaguely religious” belief that terminating an unborn child with dwarfism or Down’s as a means of “releasing their spirit” to be reborn to a better body really sounds like a twisted form of Buddhism meshed with eugenics. Even if it could be proven that s soul can be reincarnated or resurrected, there is no garauntee that the next body will be better than the present. In fact, what is the ideal body? Everyone, to some degree, deals with physical and mental challenges, and the “teleos” of humanity is to learn to adapt and overcome. If I could a take a magic pill that would transform me into an average-sized person, I would refuse to do so. My entire personality and spirit has been shaped by my life experiences as a dwarf. (Although, I would gladly take a pill that would permanently remove orthopedic pain).I guess Short Short would have a different view if he held his own baby in his arms. I never had kids either, but my adopted dwarf daughter did. And holding my grandson in my arms on the first day of his life was truly a sacred moment. Early in his gestation, my daughter’s doctors tried to persuade her to abort, for fear of double dominance. She refused, and we are all richly blessed by that choice. I would give my own life to preserve that of my grandson. That choice shouldn’t be left to cold-hearted scientist.

  7. Harry

    Dan,I enjoyed your post. Thank you for sharing. One of my children is multiply handicapped, and is far from “normal”, yet he brings true joy to many other people every day, not to mention to himself. The growing cultural demand for “the perfect child”, it seems to me, is simply the very sad but logical dead end of a purely materialistic worldview applied to one’s offspring.Today from a global perspective, the most common genetic “defect” which leads parents to choose abortion is the XX chromosome — which causes a female child. Tens of millions of abortions worldwide have been performed for this reason alone after genetic profiling. Google “female feticide” for more information.

  8. luisa101402

    I am an adult with achondraplasia dwarfism and I have 2 children who are normal statured.I think alot of you people are sick in the head and have no right to go around and ask people these questions.If I was to find out my child had downs I would still have him or her.What has this world come too?

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