‘Disease’ vs. ‘Difference’: A Question of Eugenics?
Oct 15, 2018 | Video by Jill Rosenbaum via Retro Report and American Experience
Just 100 years ago in the United States, eugenics was the law. From 1907 to 1931, Indiana, California, and 28 other states carried out the forced sterilization of more than 64,000 people who were deemed “unfit”—including the “intellectually disabled,” immigrants, people of color, poor people, unmarried mothers, the physically disabled, and the mentally ill. These compulsory sterilization programs were upheld in the 1927 Supreme Court decision Buck v. Bell. Though the term is most often associated with the Third Reich (after which it collapsed), the eugenics movement began on American shores—and the difficult questions it raised persist.
A new video from Jill Rosenbaum at Retro Report, in association with American Experience, premiering on The Atlantic today, depicts some major bioethics quandaries that have resulted from advances in genetic screening technology. With prenatal and carrier testing now available for hundreds of conditions, it’s more common than ever for prospective parents to undergo screening for a fetus or embryo. But the conditions tested for vary significantly in terms of severity and risk of heredity. In the film, we hear from parents who terminated a Tay Sachs pregnancy after having lost their first child to the fatal disease, as well as Little Person activist Rebecca Cokely, who fears that “people will end up aborting kids like my own because of what they don’t know.”
“These are hard things to think about,” said Rosenbaum in a recent interview with The Atlantic. “What’s a disease and what’s a difference? Who, if anyone, would even know how to draw ethical boundaries? It’s stuff that geneticists and bioethicists are really struggling with.”
While making the film, it was important to Rosenbaum to avoid placing judgment on any of her interview subjects—many of whom have faced complex choices or life circumstances. “These issues are so personal,” Rosenbaum said. “What might be tolerable for one person in terms of risk may not be tolerable for somebody else. The thing that eugenics movement did is that it made decisions for people. It judged people.”
More explicitly, the eugenics movement declared which lives were worth living. And while Rosenbaum acknowledges that the lines are blurred, she doesn’t believe genetic screening is inherently dangerous. “To know what your genes have in them—that’s just information,” she said. “We shouldn’t be in the position of telling people that they can’t learn things about themselves.” But people need to be educated about their results, Rosenbaum said, “and there’s a real shortage of [genetic counselors] right now.”
“You wonder if we’re starting to get too close to the edge of trying to be perfect,” she added. “What would the world be like if we didn’t have anybody who was different?”
For more, watch ‘The Eugenics Crusade’ from American Experience on Tuesday, October 16, 2018, at 9/8c, which tells the story of the unlikely –– and largely unknown –– campaign to breed a “better” American race.