Should We Try to Cure Down Syndrome?

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.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. LeticiaVelasquez says:

    I am honored to be on your roster of contributors this month, Amy Julia. This blog is the place to be for Down Syndrome Awareness Month.

  2. LisaLaverty says:

    Yay! So excited to read here all month! Thanks for putting it together Amy Julia.

  3. Angie Martin says:

    I’ve had well-meaning friends tell me that I need to take our daughter Hope to a healing prayer session to ask that God remove the curse upon her and “heal” her of Down Syndrome. I have refrained from physical violence at the offensive suggestion that she is somehow innately “wrong” and instead merely stared at them, hard, and asked, “What if I believe that Hope is exactly as God intended her to be and that she is NOT a curse, but a blessing?”

    What if I believe that Hope is a girl, a teenage girl, a Christ-follower, a gymnast, a devoted friend to many, a volunteer in the community, a liturgical dancer, a belt-it-out singer of worship songs, a Wii-Dance champ, a devoted pray-er (both public and private) of the Lord’s Prayer, the possessor of countless imaginary friends (who make me crazy–they have been confined by me to living under the dresser in her room), a billboard model in Times Square, a speaker at a state residency program (yes, she teaches the future physicians;in fact, the exhausted, jaded residents broke into spontaneous applause at the conclusion of her speech), the subject of a photo shoot for a local salon, and the bravest person I’ve ever known? Should we ask God that she be “healed” of that??

    We wanted a baby with Down Syndrome. God didn’t see fit to give us one by birth, so we adopted one. Because we thought that this particular type of person was one that we wanted to spend our life with.

    Don’t mess with that 21st chromosome; it’s sacred.

    • Angie–it’s so great to read about Hope. Thank you for passing along such a great portrait of your daughter.
      Amy Julia

    • So it’s a blessing that she is likely to develop Alzheimers and a host of other conditions, and die horribly and in pain in her fifties? It’s a blessing that she will never be able to function at her full potential in the modern world?

      Downs syndrome is a medical condition, plain and simple. I commend you for adopting your daughter, but her disability is not a blessing; it’s a tragedy.

  4. Y. A. Warren says:

    In truly committed community of responsible compassion, the vulnerable will be a blessing. Unfortunately, our society wants to “fix” everything for their own convenience. Whether a vulnerable person is in a life-long committed, compassionate society should be deciding factor in how to treat their vulnerabilities.

    • Monimonika says:

      The “cure” for Down Syndrome is long off, and most likely won’t help those already born and living that much, so I’m all for educating everyone on acceptance of DS as part of the range of typical human traits. Even if a cure does pan out, if there are any severe/moderate/not-insignificant risks or negative side-effects, I will still be behind what you say.

      However, your disdain for society wanting to “fix” things is hard to swallow. If a kid is having trouble seeing and it can be “fixed” by giving prescription eyeglasses, would you object to that as society being biased against the vision-slightly-impaired? Would you insist that the moral thing to do is have the kid go without the glasses and instead have the classroom setup rearranged? What about the benefits the kid would gain from improved vision in other parts of life (like reduced headaches)?

      I know DS and slight vision impairment are not even close in scale, but that’s why I placed my caveat in my first paragraph. I’m wondering what would be your stance if the DS “cure” ever comes about on the same kind of level as prescription eyeglasses are today?

      • Y. A. Warren says:

        Moniminika, My disdain is for our inability as a society to deal with the many ways that people are “different” without creating diseases out of this that may not make the person who is “different,” nor their caretakers, uncomfortable, except for society’s fear of “difference.” I love to see people reach their full potential, but we often label people disabled or diseased, rather than encourage and channel their strengths.

        Genetic engineering and invasive medical procedures are a great deal different than vision correction with eyeglasses, and I think the decision to use these invasive procedures should be based on the reality of the community committed to caring for the person being exposed to these life-altering procedures.

        The truth about the way we handle the vulnerable in our society is that we have no time for treating them as individuals and warehouse many of them. Those responsible for their care are among the most minimally paid and trained.

        Down’s syndrome children are often born top older parents. A important consideration is who will take care of the always vulnerable adult who cannot protect him or herself should the parents die before their down’s syndrome child. Only the committed community of this family should have a say in how to handle the “disability.”

  5. I have lost my son Liam to Trisomy 18. The only day we had with him was the day he was born as he died at birth. It was quite possibly the most tragic thing I have ever been through in my life. I still wonder what my life would be like if he was in my life today. Not one day goes by where I dont think about him. I wish I would have had that chance to see him grow … even it was only for a few years.
    I dont think that needs to be a “cure” so to speak for down syndrome because they do have the ability to live a very fulfilling lifestyle and they are by far some of the most courageous, loving, fun people I have ever met in my life. My cousin has down syndrome and I just love him to pieces. I worked with 6 teenage girls with down syndrome one summer and had the time of my life!
    However, if there was a way to help chromosomal birth defects so that children who have terminal ones could get some help to allow them to live their life instead of dying so fast, I would be more than happy. I just wish it would have been around when I needed it.

    • Heather, I’m so sorry to hear of your loss. In a few weeks, I will have an essay by a father of a boy who died at birth with trisomy 18 as well, and I do wonder what implications this research on trisomy 21 might have for other trisomies. Thank you for sharing your story

    • I also just emailed Dr. Guedj to ask whether this approach might be replicated for trisomy 18. He wrote, “I have already discussed with two persons from the Trisomy 18 foundation and told them that the same research approach can be used to find treatments. In my knowledge, however, no mouse model of trisomy18 was created to study this condition.
      If our approach works for T21, it will open more doors for similar research in other conditions.”

  6. This debate comes up in the autism community as well, even though no potential “cure” is in sight. And I admit I am of two minds about it. There are people with autism, like Temple Grandin, who have said that their autism makes them unique and they would not want to be “cured”. My son has autism, he is an artist, has a great sense of humor and loves wordplay, has an extremely sensitive soul, has fallen in love and has good friends. And yet, he will ask me “how long am I going to be autistic?” I hurt for my son, because our world is not set up to accommodate people like him, but also because we know from courageous people like Carly Fleischmann, that many autistic people feel “trapped” in a body they cannot control. I know that if there were a “cure” for autism, my son would want to take it so that he could express the trapped thoughts and feelings that he has such difficulty expressing because of his autism. So on one hand, I think that people like my son and like the author’s daughter have much to teach us, and I value their contributions to the world. But, I would defend the individual’s choice in whether they wanted to be “cured” or not. So, while I think that people who have Down syndrome or autism may be comfortable with who they are now, I don’t think that anyone would choose to be born into this world with Down syndrome or autism, nor do I think most parents would choose that for their unborn child. Yes, part of the problem is our society — we do not allow these individuals to achieve all that they can; but it is this society that we have and that my son longs to be a part of.

  7. BillYeager says:

    Try asking the question a different way, perhaps, “Would I choose to go from being an adult without [insert genetic condition here] to being one who did have [insert genetic condition here]?”.

    Or, if you still struggle to get past your wishful-thinking and emotional projection which, while understandable, is exactly that, maybe you might want to consider the question from the perspective of the person you love who has [insert genetic condition here].

    Their mental faculties may not currently be up to the job of being able to effectively consider and reason themselves an answer to the question, “Do you want to be cured of [insert genetic condition here]“, as a direct result of being a person who has [insert genetic condition here]. So, rather than you believing that either ‘you know best’, or that they wouldn’t actually want to receive a treatment that cured their condition, which is utterly dependant on you knowing that you are not misinterpreting the reality of the life that they experience, maybe ask yourself this, “Would the person I love, if they were successfully cured of their condition and reached a measurable level of intellectual capability to be able to rationally evaluate their life and situation, choose, having done so, to opt for a ‘reversal’ treatment to return their physical and mental state to that which existed before they were cured?

    Chances are the person you love, if they were cured of their condition, would become somewhat different to the person you love. That may be what the hand-wringing and claims towards ethical ‘dilemma’ is actually about, the idea of losing the person you love in order to allow them to become the person they would be without their condition.

    • Bill, I’m not sure this is as helpful an idea as you might think. I was talking with my husband yesterday about his uncanny ability to take in all the sensory experiences going on all around him. I miss tons of those details because I spend so much time inside my own head. I admire those qualities in him, and he in me, but neither of us wants the other person’s brain because we enjoy who we are as we are. Similarly, if people with Down syndrome largely enjoy being who they are, it doesn’t mean that those of us without Down syndrome should wish for a third 21st chromosome, but it might tell us to be careful before we go trying to cure people who enjoy their existence.

      • BillYeager says:

        That’s not exactly an honest comparison of the situation I am describing, Amy. You are projecting your perceptions onto your husband and he, on to you. You are both adults who have the mental capacity to understand what differences there may be in your personalities and capabilities, therefore, it would be reasonable to assume that you are both equally capable of reaching a reasoned and reasonable understanding of the facets of each other’s particular psychological traits and their perceived advantages/disadvantages.

        When it comes to significantly different neurological and physical attributes, borne of genetic code which prevents or seriously inhibits a person’s ability to function at the same intellectual and emotional level as you, there is no justification in claiming that, because two people of similarly high-functioning capabilities profess to being perfectly happy with their differences, the same can then be projected on to a person who is unable to evaluate their situation with the same degree of intellectual capability.

        Think about it, if you could administer a treatment that immediately resolved all the purely physical problematic elements of the genetic condition, ensuring that the person, while remaining neurologically the same, would no longer be suffering from the myriad health issues and risks associated with their genetic condition, I am sure you would choose to do so, yes?

        So there is only one ‘contentious’ issue here when it comes to a ‘cure’ and that is whether you believe it would be right or wrong to restore a person’s neurological capacity to the same high-functioning capabilities as those enjoyed by yourself and your husband.

        • Bill, do you think there is an “ideal” intellectual capacity? I think that many of us with high intellectual capabilities assume that it is unpleasant to not share our capabilities, but I’m no longer certain of my assumption. We all have limitations and possibilities that often correspond to one another. My brain (among other things) enables me to think a lot. It also enables me to struggle with worry, competition, perfectionism, and a variety of other issues that in the past led to a severe eating disorder and, for others in my family, severe depression. Penny has different challenges, to be sure, but she also has different gifts.

          • BillYeager says:

            Do you believe that, because you have experienced periods of mental illness, as have many ‘normal’ people, it serves as a reason to deny Penny the chance to experience life with an intellectual capacity to properly function independently of you and to have her own career and lifestyle borne of an ability to reason and contemplate life to the same degree that we are able to?

            The suggestion that this discussion is about whether there is an ‘ideal’ intellectual capacity is simply a straw-man.

            The question is, if there were a ‘cure’ for this syndrome that could be given to reverse the mental and physical dysfunction caused by it, do you think you are entitled to decide that Penny shouldn’t have it?

            Given that she currently lacks the capacity to rationally decide on such a matter herself, she would need to receive the treatment in order to, subsequently, ask her whether she was ok with having been ‘cured’ or if she wanted to be ‘restored’ back to her previous state.
            These ‘gifts’ you say she currently has, do you think they would be reason enough for her to choose to undo a successful treatment?

          • Bill, there are a number of points upon which we differ, beginning with the premise that independence is the goal for all of us, and also that intelligence is a good measure of quality of life.

            As for our particular situation, at this point in my children’s lives I am the one (with my husband) who is entitled to decide what treatments/ therapies/ medical interventions they should receive. I am wary of cognitive interventions because of the assumptions that Penny’s life would be improved by virtue of a higher IQ and also because we are uncertain as to side effects and unintended consequences. I don’t know what role Down syndrome plays in who my daughter is. But I do know that I love who my daughter is, and that most people with DS report happiness with their lives.

            Again, on the particular level, it might be worth describing Penny. Yesterday, she got up and “helped” me toast her bagel. She then ate her breakfast, cleared her dishes, and joined her sister and brother upstairs to get dressed. She got herself dressed, brushed her teeth, made her bed, and, with some cajoling, put on her shoes. She insisted upon tying her own laces. Her only distraction was her desire to read a chapter of Prince Caspian, by herself. After school, she went to the dentist. She told me afterwards, “It was great, Mom. I prayed for God to be with me the whole time.” I took her to ballet, where she joined a group of her peers for an hour. We ate dinner, and she went to bed. She woke up in the middle of the night. She was concerned because she wanted to make sure her dad had given Marilee, her little sister, the purple heart ring that Marilee had really wanted.

            Does Penny have deficits? Yep. Does she have strength and courage and kindness? Yep. I’m not sure what there is to “cure” about her.

          • BillYeager says:

            She sounds like a super little girl and you have every reason to be proud of her. But take a look at your first paragraph in that last response of yours – “points upon which we differ . . .the premise that independence is the goal for all of us”.
            I can equally retort that perhaps you are implying dependence is the goal for you, as far as the future you envisage for Penny. That she be dependent on you.

            You know that, as she gets older, the gap in intellectual capability between her and her peers will widen considerably. If you had the chance to reduce that gap, in order for her to be able to function as an independent young woman, instead of relying on you, your family and a solid support structure of committed adults in order for her to even consider some of the options that are taken for granted by non-down-syndrome young adults, are you saying you still don’t think you would want to reduce that gap because that might change her in some way that you are not comfortable with?


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