O Brave New World

This is scary. Some excerpts: Confessions of a Genetic Outlaw.

From time to time, we are all confronted with the disconnect between how we see ourselves and how others see us. I’ve always seen myself as a responsible, law-abiding citizen. I recycle, I vote, I don’t drive a Hummer. But I’ve come to realize that many in the scientific and medical community view me as grossly irresponsible. Indeed, in the words of Bob Edwards, the scientist who facilitated the birth of England’s first test-tube baby, I am a “sinner.” A recent book even branded me a “genetic outlaw.” My transgression? I am one of the dwindling number of women who receive a prenatal diagnosis of Down syndrome and choose not to terminate our pregnancies.

Interesting how religious language is being usurped here. This is the new religion of Social Darwinism or as JPII put it, the “Culture of Death”.

A few years ago, author Christine Rosen wrote, “Those who oppose discarding unfit embryos or aborting unfit fetuses will soon become�perhaps already are�a dissident culture, tolerated at best, but more likely heavily regulated by a society that increasingly expects only healthy children to be born.”

My sister-in-law has already encountered this hostility when she declined to have genetic testing done. I’ve encountered the pressure to conform to society’s standards of controlling reproduction at the hospital where only days after giving birth I was asked about birth control and my ob’s office where the walls are covered with adds for “the pill” and when I told them I was using NFP I was told how hard it would be. I feel like an outlaw too.

Scientists are beginning to tell me precisely how much dissident acts like not aborting my son cost society. A study published in 2000 in the American Journal of Medical Genetics concluded that the average lifetime cost of each “new case” of Down syndrome is $451,000.

Because you can measure the worth of a human life in dollars and cents.

Perhaps if we honestly confront this disconnect, we could start providing some more informed support to those loving and caring parents who are making difficult decisions in the offices of those conscientious medical professionals. We might tell them that studies show that people living with disabilities judge the quality of their own lives much higher than others expect. We might share with them stories of the incredible grace, joy, and happiness that many parents of children with disabilities experience. And when we hear about parents driven to despair by the difficulties of caring for a child with a disability, we might start asking ourselves how many of those difficulties stem from the erosion of a societal consensus about our responsibility to care for the most vulnerable segments of our society, rather than from the disability itself.

I would not want scientists to stop delving into the mysteries and wonders of the human genome. I am glad that I knew my son had Down syndrome before he was born. If one of these scientists found a “cure” for my son’s Down syndrome, I almost certainly would give it to him. But I will admit that I would pause beforehand. I would think hard about this real-life conversation between a teenager with Down syndrome and her mother. The daughter asked her mother whether she would still have Down syndrome when the two were together in heaven someday. The mother, taken by surprise, responded that she thought probably not. To which her daughter responded, “But how will you know who I am, then?” And I would also think hard about whether the world would really be a better place without my son’s soft, gentle, deep, almond-shaped eyes.