Eugenics was a disturbing sociopolitical movement in the early 20th century that promoted reproduction of the “fittest” and limited reproduction of the “unfit” with “inferior” genes. It took root in academia, influenced a famous Supreme Court decision, and resulted in the forced sterilization of tens of thousands of mentally ill or mentally challenged women in this country.
Adolf Hitler’s embrace of eugenics would discredit the movement, but unfortunately it didn’t disappear. Today, in fact, we see the rise of a new eugenics, made possible by the rapid development of bioscience and biotechnology, especially from the mapping of the human genome.
We now have researchers with the scientific know-how working with Wall Street-backed corporations to develop the new weapon in the struggle to rid the world of people with developmental disabilities: a “non-invasive prenatal test (NIPT)” that can detect a “disability” or “genetic disorder” anywhere from the fifth to ninth week of pregnancy without amniocentesis. One of the first “disorders” targeted by NIPT technologies is Down syndrome (DS). Although this test is sometimes promoted for “women at risk” for having children with DS, often the long-term goal of this technology is universal testing.
To be blunt, this test will likely result in a rapidly decreasing population of people with DS.
We know that, of all women who receive a positive amniocentesis (invasive) test for DS, 80 percent to 90 percent choose to terminate their pregnancy. In Europe, a Copenhagen newspaper editorial recently predicted that in five to 10 years, there will be no people with DS in Denmark.
Quite simply, the technology is dangerously ahead of society’s understanding of people who have Down syndrome. Those with DS contribute significantly to their families and communities. When surveyed, nearly 99 percent of individuals with DS express that they are happy with their lives. In a similar study, nearly 99 percent of families with a DS child express happiness in being involved with their children’s lives.
Contrast this with a recent Harris Poll showing that only 33 percent of Americans are happy with the direction of their lives. Why are we developing tests to detect and thus eradicate people with DS instead of celebrating their lives and the joy they bring? While the companies involved with this technology may claim their testing is neutral, they are capitalizing on the fears of expectant parents of having an “abnormal” child. Early detection is not intended to provide information or preparation time but merely allows for more guilt-free early termination, in pursuit of corporate profit.
Such testing to remove “abnormalities” will clearly not stop at DS or other conditions such as spina bifida. Ultimately, the aim will be to detect all so-called “disorders,” then to detect mental illnesses and diseases such as Alzheimer’s, kidney disease, Parkinson’s, etc. What next? Extending these tests to physical or personality traits? Designer kids? A world without imperfection? A perfect human race? Wasn’t that the goal of the original eugenicists?
Taken to an extreme, Princeton bioethicist Peter Singer has said: “When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed.”
This is obviously technology and philosophy that the American eugenicists in the 1920s would have embraced, along with their counterparts in Nazi Germany. And unless we stand up against the proliferation of this technology, we will be abetting the advance of significant reduction or even elimination of genotypes on a scale never before seen.
Lloyd Lewis is board chair of the Rocky Mountain Down Syndrome Association. He is CEO of Arc Thrift stores and president of the Colorado Cross Disability Coalition. Julie Reiskin is executive director of the coalition.
