“These attributes do not define those we love.”

Domenica Lawson with her godmother, Princess Diana

On the right side of the homepage, you’ll see a scroll of my twitter feed. Unlike common uses of twitter, I do not update my followers where I’m eating dinner or what I think of the movie I’m watching. Instead, most all posts are links to news reports about Down syndrome. I invite you to follow the feed to see the news of the day. Some articles, however, are deserving of a larger exposition than the 140-character limit of Twitter. An article from last week is just so deserving.

Dominic Lawson, an English columnist and editor, has a daughter named Domenica, who happens to have Down syndrome. Over the span of her life, Lawson regularly has commented on news events concerning Down syndrome. His November 19th column addresses what heretofore had been an existential question that may someday become a reality due to scientific advances: would a parent choose to “cure” their child of Down syndrome if able to do so?

What prompted Lawson’s column was news out of Washington state that scientists had removed the third chromosome 21 from cells in the laboratory. Down syndrome is caused by an extra 21st chromosome, hence if a method could be developed to remove the third copy, then there would no longer be the genetic cause for Down syndrome. The researchers were clear that their accomplishment in the laboratory is nowhere near to being something that could be performed on a full human being which would have trillions of cells with a third copy of Chromosome 21. But, the news of their success nonetheless poses that possibility. It is informative, then, to consider what a fellow parent says about having the option of “curing” his child from having Down syndrome.

Lawson correctly points out that even this development is not necessarily a “cure” that would prevent Down syndrome from occurring. Down syndrome is something that happens for still unknown reasons at or near the time of conception. It has been a naturally occurring condition throughout human history. Therefore, this theoretical removal of the third copy would not prevent Down syndrome anymore than some would like to say that early diagnosis and termination prevents Down syndrome. Instead, the removal would be a treatment for those conceived with Down syndrome. But, even then, Lawson questions whether he would have his daughter “treated.” Lawson writes such a treatment would fundamentally change who their daughter is:

 My 17-year-old younger daughter, who has the condition, is what she is; and that is the person her parents and sister know and love. If she were genetically re-engineered, would she be the same person? She would certainly be very different; with the ability to count or read a clock, possibly even to penetrate the secrets of calculus: but those are not the sort of attributes which define what we love in those to whom we are closest.

He does not discount the challenges his daughter faces for having what is commonly considered a disability. But, he then wonders what should really be curred:

It is true that people with disabilities, especially those visible to the naked eye, can often be teased or bullied, and this certainly causes suffering to the victim; but it is perverse to assert that the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.

Mr. Lawson’s entire column really should be read. It is far more eloquently written than anything I have or will write on this subject and this is why I chose to feature it. For all of his wrestling with the issue, he concludes by saying he does not mean to criticize the progress or science, only to question what are “conditions” that should be “cured.” I’ll let his concluding paragraph also conclude this post:

None of this is meant as a criticism of the attempts by American scientists to find a treatment for Down’s Syndrome, especially as it presents itself as an alternative to the eradication policy more central to medical practice in this country. Nonetheless, just as Americans tend to overuse anti-depressants, in the vain belief that continual happiness is the natural state of mankind, they seem to have a national tendency to want to change anything that does not seem perfect.

That is a mighty force for progress: but it is not the secret of life.

Question: What do you think? If there was a cure for Down syndrome, would you have your child (real or hypothetical) undergo the treatment? Your answers will inform future posts on treatments and the role of DS in our human community.

 

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