It is exciting to read about promising new gene therapies that might make living with various disabilities easier or even render them extinct. Researchers at University of Massachusetts Medical School are working on a way to “turn off” the extra chromosome found in people with Down syndrome. If the gene therapy works as they hope, turning off the chromosome would mitigate some of the effects of Down’s. So far this possibility has only been glimmered in a laboratory dish, but ultimately the goal would be to turn off the extra chromosome prenatally, so that the brain would form without developmental and intellectual encumbrances.
Certainly no one wants children to suffer, and yet using gene therapy to eliminate the Down syndrome chromosome, and potentially other genes as well, stirs some uneasiness in me. What are the unforeseen consequences of prenatal gene therapy? My first worry concerns fairness. If certain disabilities, like Down syndrome, could be eliminated prenatally, it would probably not be like eradicating smallpox, when vaccination was inexpensive or free and legally required of practically all. With our inequitable health care system, some families would not be able to afford the therapy, and so their experience of raising a child with Down syndrome might be more burdensome than it would have been otherwise. It stands to reason that there would be fewer special needs services available if there were fewer special needs kids.
My second apprehension concerns scope. We might agree that everyone would be better off if certain disabilities and diseases were eliminated, but how would we decide which ones to purge if gene therapy becomes a viable reality? If scientists find a gene for severe obesity, should they try to abolish that in utero? What about height? Though recent studies suggest otherwise, many believe that short people, like the severely overweight, face social discrimination. Should probable future height and weight be considered disabilities that warrant fetal tinkering? What if there is indeed a “gay gene?” Can we imagine some people wanting to rid that potential in their children? “Not that there’s anything wrong with it,” I can almost hear folks saying, “But it would just make their lives so much easier if they weren’t gay!”
That the new gene therapy concerns eliminating Down syndrome is not without irony. Our thinking about Down syndrome has changed dramatically over the years, and in fact, that shift has been instrumental in how we approach the care and management of all infants born with disabilities. In the 1940s and 1950s, many hospitals, physicians, and parents considered it perfectly reasonable to refuse surgery for babies with Down syndrome and duodenal atresia, a gastrointestinal condition that often accompanies Down’s. Many of these babies simply died. Those who lived often spent their lives in institutions. In a statement that is rather appalling to read today, Dr. Benjamin Spock, the nation’s leading pediatrician of that era, wrote of Down’s children: “If the infant merely exists at a level that is hardly human, it is much better for the other children and the parents to have him cared for elsewhere.” 
Our ideas evolved over the years. Today parents are not permitted to refuse life-saving treatment for babies born with Down syndrome and duodenal atresia, nor can they refuse treatment for conditions that attend other disabilities like spina bifida. Thanks to disability rights activists, ethicists, and others, we no longer think it is acceptable to “put a baby away,” either hidden in an institution or in a more lethal manner. But still, many parents believe that having a baby with Down syndrome would be too difficult, and so they choose to terminate the pregnancy once prenatal tests confirm the extra chromosome. Now, with this new gene therapy, we may have a non-abortive option, one that will turn off the extra chromosome in order to mitigate some of the Down syndrome effects while the baby is still in utero. If this option became available, might it also become compulsory?
If we could eliminate suffering, I would be all for it. I don’t think that we should stop these inspiring efforts in gene therapy research. Rather, I think we need to discuss the ethics of such interventions before we move full speed ahead. We might want to distinguish, for example, between diseases and disabilities. We might decide that it makes sense to alleviate physical pain, but not to get rid of traits that some regard as socially challenging (like short stature or being gay). We definitely would need a better and more systematic communication system so that parents who are actively raising children with disabilities can speak candidly to prospective or new parents of such children. And we need to make sure that we support families who can’t afford this therapy or don’t want the therapy, or don’t even want to get tested in the first place. I don’t know the answers to all the conundrums that will arise as this research takes shape, but I do know that there are many questions that deserve thoughtful and widespread discussion.
 Benjamin Spock, The Common Sense Book of Baby and Child Care (New York: Duell, Sloan and Pearce, 1946), 478.
 See, for example, Erik Parens, ed., Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality (Baltimore: The Johns Hopkins University Press, 2006).
Reblogged this on SHADES AVENUE / Avenue des Ombres.
Hi Elizabeth, thanks for sharing this informative post. Very useful information shared regarding gene therapy. Really great job done. Awaiting for more posts like this.
I definitely appreciate an article about the new research on gene therapy for Down Syndrome that expresses ambivalence towards the possibility of eradicating the triplicated 21st chromosome. I would point out that I hesitate to send this article to friends of mine raising children with DS because of the idea that it is “exciting” to render disability extinct and the phrase ‘Down Syndrome Child.’ DS advocates and self-advocates have been incredibly vocal about using language that does not describe someone as an intellectual disability–a child with Down Syndrome, someone who has Down Syndrome.
Good point, AEK. I will change that wording.
As a parent of a child with a genetic defect that has required multiple surgeries and more to come I find it disheartening to hear someone say that curing disabled children might be unfair, more burdensome for others and put people who care for these children out of a job. Not treating people who are suffering when you have the means is unethical. If you see a parent with a disabled child, know that they would cure them in a heartbeat and be happy for any child who is cured even if it is not their own child.