ADA and the New Eugenics


By Andrew J. Imparato and Anne C. Sommers

With the mapping of the human genome, potential for improving the quality
of life of 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 week, on July 26,
America marked the 15th anniversary of the signing
of the Americans with Disabilities Act (ADA), 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
reevaluated 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repealed (more than half the country originally passed such laws and of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 a few governors
issued apologies.  Did these acts reflect a true attitudinal change or
simply a lesson learned to be more covert in our efforts to eliminate
genetic "defects"?

Todays 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." 

Just consider some recent 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 Governor 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. 

You may send comments to Andy at imparatoa@aol.com