Should We Try to Cure Down Syndrome?

Should We Try to Cure Down Syndrome? October 1, 2013

For some, this question holds an obvious answer. Down syndrome is an abnormal genetic condition that leads to suffering. It needs to be cured, plain and simple. For others, the question itself (not to mention any attempt at an answer) is offensive. It implies that people with Down syndrome can’t live equally vibrant and fulfilling lives as the neurotypical, able-bodied among us.

It’s interesting, even in deciding what images to use alongside this post, I found myself thinking about both the clinical image of a karyotpye of a child with Down syndrome (see  below) and an image of our daughter Penny. Which one provides a visual representation of Down syndrome? Both. Down syndrome is both clinical and personal, and much as a karyotype offers a visual reminder of the triplicate chromosome, the face of a child (or adult) with Down syndrome offers a visual reminder of the person–the individual, socially and culturally-embedded, limited and gifted and vulnerable and capable person–involved in this discussion.

I don’t ever think about Penny being “cured” of Down syndrome, which I suppose betrays my own leanings on the subject. But I was prompted to ask this question again over the summer when a new study on mice suggested that researchers might be able to “silence” the chromosome that leads to Down syndrome. In my initial blogpost on the topic, Three Reasons Why We Might Not Want to Cure Down Syndrome, I suggested that social, emotional, spiritual, and even medical aspects of Down syndrome need to be contextualized and considered before we attempt to “cure” people with a third copy of chromosome 21. The responses to my post only highlighted the divide that exists. Some readers supported my own thoughts and questions:

 Down syndrome is a genetic condition not a disease. People with Down syndrome experience a range of health issues as does everyone else. If they have a health issue, it’s because they are human, not because they have Down syndrome. Just like you and me. There is nothing wrong with the condition, no-thing to be cured.

Others lambasted me for suggesting we might not want a “cure”:

I can not tell you how insulting these kinds of pieces are! Simply replace the word DS with any other chronic disease and you will see what I mean… One day, when [my daughter’s] brain is healed, she will come back and tell you how foolish you are to ever think that she is anything less than a human WITH a disease… To purposely advocate leaving people in a state of disease, just boggles my mind.

But in between the harsh words came some great questions: What is this research really trying to achieve? Might it also help babies with trisomy 18 or 13, which almost always end in very early death? Might it not help people with Down syndrome live without the complications of heart defects? Might it allow them greater independence? Might it be our culture that needs help (a cure?) for prejudice rather than individuals needing a cure for a chromosomal condition? What role does faith/religion play in considering these topics? Are people with Down syndrome “special”? Would it change their personalities to silence the chromosome?

And although I have thought through my answers to some of these questions, plenty of questions remain for me.

In response, I decided to take a step back and pull together an array of opinions and information surrounding this topic. October is Down Syndrome Awareness Month, so for every week of October you will be able to read three guest posts that address, in some form or another, the question, “Should Down Syndrome Be Cured?” (On Mondays and Fridays, you’ll still hear from me. Tuesday, Wednesday, Thursday will be for the guest posters.)

I cannot tell you how excited I am about the individuals who will contribute their thoughts to this space in the next month:

There’s Dr. Guedj Faycal, of Tufts University, who helped author the original study and responds to my questions about the research itself and its purpose and future.

There’s Columbia University Professor Rachel Adams, author of Raising Henry: A Memoir of Motherhood, Disability, and Discovery, who reflects upon the language of “cure” and the social construction of disability.

There’s Tryn Miller, a young woman with Down syndrome who has written about friendship here before. And David Zahl, a blogger and cultural critic, who will consider the larger cultural context of questions about changing people’s genetic makeup. Later in the month come ethicist Hans Reinders and theologian John Swinton, bloggers Lisa Morguess and Leticia Velasquez, Professor Aaron Cobb and Gary Bender, writing with her daughter Alex, who has Down syndrome.

We will hear from Christians and atheists, professors and laypeople, fathers and mothers, and also from people who themselves have Down syndrome.

I suspect that some posts will only raise further questions, but I hope this array will spark a conversation about the place of children and adults with Down syndrome in our society, both now and for generations to come.

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