None the Same as the Other: Ethical Reflections on Eradicating Down Syndrome

None the same as the other, with or without that third chromosome 21

I am honored to share with you a guest post from author and ethicist Hans Reinders. As his bio attests below, Dr. Reinders has thought and written about ethics and disability for many years, and his thinking had a profound effect on my own understanding of the place of people with disabilities in our society and in my life. Today, he reflects upon the question we’ve been looking at throughout October: Should we try to cure Down Syndrome? (Scroll back through the past three weeks for more posts on this topic from medical, personal, and social perspectives):

A few years ago I was discussing with a researcher in pediatrics the prospect of eradicating Down syndrome from the face of the earth. He made an observation that struck me as important to understand the polarity in the debate. “As pediatricians,” he said, “we have contributed to a uniform picture of the condition, suggesting that when you’ve seen one child with DS you have seen them all.” He argued that this was a mistake, and I could tell from my own experience that he was right. I once visited a school in Mexico City where they brought children with DS daily from the slums of that city to give them an education that their own families could not afford them; three hundred of these kids and none of them the same as the other.

Of course it can argued that they at least have this one extra chromosome in common, otherwise they would not be identified as people with Down syndrome, but this observation tells us next to nothing about their lives. It does not inform the debate on whether humanity would be better off without DS in any significant way.

To see my point just think about the following analogy. Children with DS have a higher risk of a number of medical conditions that can cause serious illness, like a congenital heart failure. The conclusion following this fact seems to be that DS should be classified as a medical condition that needs treatment aiming at cure. Or, even better, that ought to be prevented from occurring altogether.

Does this conclusion indeed follow? Well, consider this. Women have a higher risk of some medical conditions that cause serious illness, like breast cancer. But from this fact we do not conclude that being female should be classified as a medical condition that needs treatment aiming at cure, etcetera.

My son’s wife, who is a thriving young woman of thirty, has inherited from her mother the dreadful BRCA1 gene. She lost her mother when she was only a few months old. Discussing with her father what to do to make this thing stop from ruining their family, she considered embryo selection, but decided not to go that way. “Why not,” her father said, “your mother and I would have done it had we been given that option,” upon which she retorted, “Which means I wouldn’t have been here, thank you very much.”

The problem with the debate on preventing DS from occurring is that it hinges on the same binary opposition, which forces us to take sides in what appears a Shakespearean question of “to be or not to be.” Given that the premise of that question rests on a mistake, framing the debate in this way is not going to be helpful in any way. It is not true that when you have seen one child with Down syndrome you have seen them all, and therefore the question whether we are for or against medical interventions that wipe out DS does not make much sense to begin with.

In the meantime, however, medical research resulting in these interventions goes on, and forces people, particularly women who become pregnant, to face options they may not wish to consider. Thus the question of “to be or not to be” returns as inescapable regardless of whether it makes sense or not. It is a question that as such we cannot choose not to face. Of course this considerably compromises the whole free choice issue, but that is another matter.

What is wisdom in this situation? Wisdom would be not to treat the condition of DS as if it constitutes a category; the extra gene does not constitute a particular type of human being. If my argument from the diversity among children with Down syndrome is valid – as I think it is – it is only to be expected that there will be the same diversity in the stories about how they live their lives together with their families. Something goes wrong, therefore, if we are trapped by “to be or not to be” questions.

In view of this argument it is certainly true that in aiming at preventing DS from occurring, or at switching off the extra gene, medical research is flawed because it has construed DS as a category.  But even if true, this will not make the science go away, nor will it stop medical research from moving in that direction. Too many vested interests are at stake in lines of research that have started many years ago, even when many pediatricians now may have become much more appreciative of diversity among people with Down syndrome.

In the end, the conclusion must be a sober one. True wisdom, it seems to me, is to aim at medical support for children with DS and their families that will enable them to enjoy life as it is, with its ups and downs. Many medical researchers and clinicians are working in this spirit. Since it has been proven that many of these children can be flourishing human beings, it would be very sad, and unwise, to push medical research primarily in the direction of eradicating Down syndrome.

Johannes (Hans) S. Reinders (1950) received his PhD from VU University Amsterdam, where he is Professor of Ethics since 1995. He has been a visiting scholar in philosophy at the University of Notre Dame and a resident scholar at the Center for Theological Inquiry in Princeton. In 2007 he founded the European Society for the Study of Theology and Disability (ESSTD). Since 2010 he acts as General Editor of the Journal of Religion, Disability & Health. Among his most well known books are The Future of the Disabled in Liberal Society: An Ethical Analysis (the University of Notre Dame Press, 2000), and Receiving the Gift of Friendship, Profound Disability, Theological Anthropology, and Ethics (Erdmans Publishing Company, 2008). He edited a volume called The Paradox of Disability: Responses to Jean Vanier and L ’Arche Communities from Theology and the Sciences (Erdmans Publishing Company, 2010). A study entitled Disability, Providence, and Ethics: Bridging Gaps – Transforming Lives, will be published by Baylor University Press in 2014.

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. So many times I have said this same thing (well, in my own words of course). You must treat DS as anything else. Those with DS are all affected differently. Just as those with Cancer or Diabetes are affected differently, we don’t dare try and “get rid of” those with those diseases…why would we those with DS? We do find cures and treatments, and I think we do with DS as well (healthy diets, early intervention, etc…) They are NO DIFFERENT than individuals with 46 chromosomes. I have a 22 month old with DS and she is a joy…I can tell she is going to go places and teach so much more to others than I could have ever imagined!

  2. LeticiaVelasquez says:

    French geneticist Dr Jerome Lejeune, who first discovered the cause of Down syndrome, trisomy 21, phrased it this way, “The only way to save them is to cure them”.
    He was aware that the great majority of unborn babies who were diagnosed with Down syndrome were aborted. Supporting parents once a child is born does not change the fact that most parents when given a choice to have a baby with Down syndrome say “no”. Education and improved therapies can not change that fact by themselves, we advocates and parents have been working for the past decade to enlighten society about the gifts that people with extra chromosomes offer a family with very limited success.
    The new prenatal tests which use the mother’s blood to give a highly accurate result in the tenth week of pregnancy threaten to eradicate even those modest advances, thanks to a precedent of four decades when the ‘cure’ for Down syndrome was abortion. If we had begun, in the sixties to work on advances to the education and lifestyle of those with Down syndrome, instead of institutionalizing them, things might not be as grim as they are. Its an uphill climb to convince parents of an unborn baby with Down syndrome of their child’s potential for a full and happy life. But medication which can enhance their ability to communicate and learn would help to convince many other parents to carry their children to term.

  3. Mike Sullivan says:

    Remarkably clear wisdom from a Professor of Ethics. Most of them just want our children dead in the name of reproductive choice, a curious disease that needs curing. At last some clarity through the fog.

  4. RachelDouglas says:

    I love a man who quotes Shakespeare.


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