Human Exceptionalism

The Joy of Parenting Children with Down Syndrome

Pre natal genetic testing has turned into a search and destroy eugenic abortion mission that targets fetuses with Down syndrome, dwarfism, and other genetic conditions.  Indeed, we know that about 90% of such nascent humans become medical waste instead of being born.  Evidence showed that “genetic counselors” pushed the abortion option, and thus the late Senator Ted Kennedy and former Senator (now KS Governor) Sam Brownback co-sponsored a law that requires neutrality in genetic counseling. And now with a test coming that can catch Down earlier, some are worried that the eugenic enterprise will shift into high gear.

Penn bioethicist Art Caplan reminds us in a good column that parenting children with Down is often a joyful experience.  From “Down Syndrome’s Rewards Touted as New Test Looms:”

David and Annelies Reilly had dozens of questions swirling in their minds when doctors diagnosed their newborn daughter, Melissa, with Down syndrome. Could she learn? Would she go to school? Could she ride the bus alone? Could she live a normal life? Could they? Melissa, now 25, is successful by any measure. The college student is a speaker invited to inspire others around the country. She travels to represent the Down syndrome community internationally, and is a Special Olympian who brings home gold medals in skiing, cycling and swimming. Additionally, she interns for a Massachusetts state senator and tutors pre-school students with Down syndrome in math and reading.

“She has taught us compassion for those who are not as strong or so-called perfect and beautiful,” says Annelies Reilly of Boxborough, Mass. “We see her as perfect and beautiful.” The Reillys represent some of the experiences reported in three surveys conducted by doctors at Children’s Hospital in Boston that suggest the reality of Down syndrome is positive for a vast majority of parents, siblings and people with Down syndrome themselves. Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome.

This is the truth I have personally experienced, both in knowing families with children having Down and in caring for a developmentally disabled person for a period of time.  Indeed, Davy was one of the finest human beings I have ever met.

But I am not sure our medical education system is making that clear.  I recall speaking to a Christian club at a medical school several years ago.  The speech was about the importance of human exceptionalism in medicine–opposing Peter Singer-style utilitarianism and the so-called “quality of life” ethic.  After my presentation, one of the students came up to me and said, “I’m a genetic counselor.  If a fetus tests positive for Down, what am I supposed to do?” his unfinished sentence “…other than suggest abortion?”  I suggested that he bring in a family with a Down child so the woman pondering what to do could get a truer picture.  He looked at me as if I was out of my mind.

But Caplan reminds us that allowing people to get such a three-dimensional picture could be just what the doctor ordered.  Aiming for the “perfect child” and eradicating those who don’t pass muster, not only (in my view) comes at a very high moral cost of ending a human life, but could actually be robbing people of great joy.  More’s the pity.

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