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 20th century, 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 sterilized—most against their will, many without any knowledge of what was being done to them—to 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. (How’s 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.
This period of history is not often included in American history classes. Right now, there’s a great little exhibit at New York University that 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 now—about 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 the Carnegie Institution’s Station for Experimental Evolution at Cold Spring Harbor, a 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 it’s important to point out that it wasn’t the research that got people into trouble back then. It was the fact that people with strong biases—racism or elitism and any number of other isms—adopted 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: it’s a timely reminder in the age of genomics that we have a social responsibility to consider not only what’s 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 20th century 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 implantation—avoiding, for example, embryos carrying the gene for a rare disease. Soon after that we’ll 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 doesn’t 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 reasons—say, selecting those with DNA linked to being tall or skinny. Go just another step: do we get to a point where we’re 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.
Elements of the eugenics campaign are so shocking that it’s hard to believe they could have occurred at the scale they did, which is why this NYU exhibit and others like it are so important. The worst eugenics efforts died down around 1940, when Americans began noticing uncomfortable parallels between what they were doing and what was being reported about Hitler’s Germany. Let’s hope we learned enough from this awful period to embrace the many positive opportunities afforded to us by genomics while keeping away from decisions our children’s children will point to as unethical.