There was a time when people in America were sterilized, sometimes unwittingly, by activists aiming to create a healthier, better population. As the progress of genomics accelerates, we need to remember the lessons of the past.
It is something of an open secret in the United States that during much of the 20thcentury, the government conducted a massive eugenics campaign designed to eliminate unwanted traits from society. It is less well known just how sweeping that campaign was: more than 60,000 people were sterilizedmost against their will, many without any knowledge of what was being done to themto prevent these supposedly undesirable traits from being passed on. Many eugenics leaders in business and government used the opportunity as a thinly veiled way to target people based on race, disability, even on grounds of morality. (Hows that for irony?)
Immigrants, African-Americans, and the mentally ill bore the brunt of it; women were more often victims because people assumed they were to blame for the birth of so-called inferior children. Sterilizations took place all over the country, frequently in prisons and psychiatric hospitals, from the early 1900s into the 1960s.
(Image courtesy of the American Philosophical Society.)
This period of history is not often included in American history classes. Right now, theres a great little exhibit at New York Universitythat brings to light the tragic events of the eugenics movement, including, for example, trends and statistics on that sterilization campaign. While 60,000 people only amounts to a large town nowabout the size of Santa Cruz, Calif., or Bayonne, N.J.consider the long-term consequences of 60,000 lost bloodlines, truncated families.
One of the most interesting things highlighted by the NYU exhibit is how much was done in the name of science. The exhibit recreates the office of scientists at Cold Spring Harbor Laboratory, a national lab on Long Island that was once at the forefront of eugenic science. Records in the exhibit document scientific work conducted to establish metrics that would determine whether someone was unfit, such as various measurements of the head.
As a champion of science, I think its important to point out that it wasnt the research that got people into trouble back then. It was the fact that people with strong biasesracism or elitism and any number of other ismsadopted the trappings of science to shore up their prejudice and to make others more willing to accept findings as fact. One stunning example of the success these people achieved is the 1927 U.S. Supreme Court ruling in favor of forced sterilizations. In this case, justices agreed that the state of Virginia had the right to compel 18-year-old Carrie Buck to be sterilized on the grounds that she was considered feeble-minded, having had a child out of wedlock (evidently the fact that the pregnancy occurred when Buck was raped by a relative did not matter).
The NYU exhibit is more than a look back: its a timely reminder in the age of genomics that we have a social responsibility to consider not only whats medically and scientifically possible, but also the potential social consequences. Otherwise we could start making decisions that future generations would find to be as shameful as 20thcentury eugenics appears to us.
Advances in genomics are rapidly opening up new opportunities, none more fraught with ethical dilemmas than those related to analyzing and editing the DNA of embryos or fetuses. Technologies can already scan the DNA of a potential mother and father and calculate the predicted risk of various diseases in their would-be offspring. We are on the cusp of being able to accurately select only the healthiest embryos for implantationavoiding, for example, embryos carrying the gene for a rare disease. Soon after that well be able to perform genome editing, adjusting DNA here and there to silence a dangerous genetic variation or boost resistance to a common disease. Who would oppose these advances? Who doesnt want their kids to have the best shot at great health?
But such techniques are just a hop, skip, and a jump away from altering embryos for other reasonssay, selecting those with DNA linked to being tall or skinny. Go just another step: do we get to a point where were editing genomes to produce children with a specific skin color or intelligence or athletic ability? We could find ourselves right back where we started: humans trying to create a better humanity. That same desire was at the root of the eugenics movement.
Link:
Could Genomics Revive The Eugenics Movement?
