|Andrew J. Imparato|
With the mapping of the human genome, potential for improving the quality of life for people with painful and degenerative conditions has brought new hope in many circles. To be sure, the prospect of cures and disease prevention has widespread appeal. Yet are we ready to use genetic engineering to prevent the birth of any baby with Down syndrome, dwarfism or genetic forms of deafness or mental health conditions? What about genetic predispositions for cancer or Alzheimer's disease? Who decides?
Last month America marked the 15th anniversary of the signing of the Americans with Disabilities Act, a landmark civil rights law recognizing that disability is a natural part of human diversity that in no way should limit a person's right to make choices, pursue meaningful careers and participate fully in all aspects of society.
The ADA stands in marked contrast to some deeply troubling U.S. history that some in today's biotechnology industry and many bioethicists have not completely abandoned.
At the turn of the 20th century, the cousin of Charles Darwin, Francis Galton, launched a pseudo-scientific movement known as "eugenics" that would snowball into a societal obsession with creating the "perfect citizen" and a dangerous intolerance for anyone deemed a deviation from "normal."
Eugenicists advocated eradicating "genetically unfit" individuals through segregation, sterilization and euthanasia. The net was cast wide - physically and mentally disabled, epileptics, blind and deaf, racial minorities, impoverished, Amish, immigrants, limited-English proficient - even those who were simply shy or who stuttered were considered genetically "unfit."
Upholding Virginia's sterilization laws in the 1927 decision Buck v. Bell, Supreme Court Justice Oliver Wendell Holmes wrote, "The purpose of the Legislature was not to punish but to protect the class of socially inadequate citizens named therein from themselves, and to promote the welfare of society by mitigating race degeneracy and raising the average standard of intelligence of the people of the state."
Following the exposure of Hitler's eugenic atrocities, American society re-evaluated domestic eugenic practices. Many sterilization laws were repealed (more than half the country originally passed such laws and of the states which did, about half retain them today) and governors began issuing apologies. Was this a true attitudinal change or simply a lesson learned to be more covert in our efforts to eliminate genetic "defects"?
Today's eugenic practices are wrapped in a white lab coat away from public scrutiny. What began as an effort to improve fertility is morphing into a new way for the well-heeled to maximize their genetic legacy.
Modern technology allows a couple to test embryos for "defects" and then only implant those embryos without such "flaws." When embryos are disposed of due to the presence or absence of certain chromosomal patterns or genes, a bold statement is being made to people living with disabilities: "We don't want more of your kind."
Consider some statements by leaders in bioethics and embryology. Professor Richard Lynn of the University of Ulster complained in 1994 that the least intelligent are having the most children. His recommendation? "What is called for here is not genocide, the killing off of the population of incompetent cultures. But we do need to think realistically in terms of the 'phasing out' of such peoples. ... Evolutionary progress means the extinction of the less competent."
Esteemed embryologist Bob Edwards said in 1999, "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."
Civil rights laws share the central tenet that all people, regardless of race, creed, gender, age, religion or disability are created equal and deserve a fair shot at the American dream. Many of the new genetic technologies, however, send the message of yesterday's eugenicists - that there are preferences and if you don't fit neatly within them, you're "genetically unfit." This kind of ideology is dangerous for anyone who values human diversity.
As Virginia Gov. Mark Warner noted when apologizing for Virginia's leading role in forced sterilizations, "we must remember [our] past mistakes in order to keep them from recurring." New genetic technologies are creating an increasingly powerful weapon to tamper with the human gene pool. As we mark the 15th anniversary of the ADA, let us hope that the ADA's inclusive vision will provide a strong counterbalance to a resurgent eugenics movement that seems to be forgetting the mistakes that led to the forced sterilization of more than 60,000 Americans and a global effort to "cleanse" the gene pool.
Andrew Imparato is the president and CEO of the American Association of People with Disabilities. Anne Sommers is a law student at William and Mary School of Law.
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