Considering 'Curing' Down Syndrome with Caution
"Should Down syndrome be cured?" read the title of a Motherlode (the parenting blog at The New York Times) post a few weeks ago. "Would you cure your kid's Down syndrome?" was Rod Dreher's version of the question. Both posts and the hundreds of comments they provoked originated with a study published in Science Translational Medicine last November. The study detailed research conducted on mice that had been genetically engineered to mimic Down syndrome. The researchers provided a drug to alter the brain chemistry of these mice, and the mice who received the drug demonstrated improved cognitive function. As Dr. Ahmad Salehi, the primary author of the study, explained, "If you intervene early enough, you will be able to help kids with Down syndrome to collect and modulate information. Theoretically, that could lead to an improvement in cognitive functions in these kids."
The study reports a theoretical possibility for improving cognition in individuals with Down syndrome. The same drug hasn't been tested on humans with Down syndrome, so we don't know whether these drugs would be effective or if they would have adverse side effects. Furthermore, the study's doctors suggest that the drugs would need to be administered early in the child's development. The individual with Down syndrome, in other words, would not be able to make his or her own decision regarding the treatment.
So the study itself raises ethical and philosophical questions, but even more problematic is the writers' suggestion that this treatment offers a way to "cure" Down syndrome. The language implies that Down syndrome is a disease, a sickness that is currently incurable. But Down syndrome is the presence, from conception, of an extra 21st chromosome in every cell of a human body (thus the technical term, Trisomy 21). The presence of that chromosome can cause any number of medical conditions, but those conditions vary widely among those with Down syndrome. The extra chromosome itself is not a disease. It is a genetic difference. So any talk about curing Down syndrome is a misnomer.
This language demonstrates more than ignorance of biology. It reduces Down syndrome to a medical condition rather than understanding people with Down syndrome as whole—emotional, physical, social, spiritual—persons. It further reveals assumptions that Down syndrome can be conflated with mental retardation, and assumptions that a cognitive delay is a disease that needs curing. Finally, it assumes that drugs are the best way to address cognitive delays, whereas other research demonstrates that children with Down syndrome have been socially conditioned to meet low expectations for their ability to learn. (Low muscle tone as babies leads to low success at the tasks babies try to accomplish, which leads to lower expectations by parents, therapists, teachers, and others, which leads the child to try less. Taken from Teaching Reading to Children with Down Syndrome, by Patricia Logan Oelwein.)
Western culture places high value upon individual achievement and intellectual ability. In both posts, the writers referred to the concern that parents of children with Down syndrome feel about the prospect of a drug that would change the cognitive ability of their children. The parents expressed concern that using a drug to change their child's cognition would change their child's personality, and that it would also contribute to the cultural assumption that higher intelligence is better, always and all the time. Readers who commented on the posts reflected this perspective with comments like, "DS is a disease that limits a child's potential. You'll never meet a Doctor or a Lawyer with DS," or, "The reason it is called a disability is because it is a lack of something (mental ability in the case of Downs) that makes a complete human being. That is a tragedy; it is not another equally good form of personhood." Again, the language is telling. Limitations are bad. Being a doctor or lawyer is good. People with Down syndrome are incomplete human beings.