For Privacy
In an op-ed at the New York Times, Nila Bala, the associate director of criminal justice policy and civil liberties at the R Street Institute, writes that parents who seek direct-to-consumer genetic testing for their children and upload their information to public websites are exposing their children’s private information.
While most DTC genetic tests are aimed at adults, parents sometimes use them to test their children, which, Bala writes, raises a number of issues, including consent. She notes that groups like the American Academy of Pediatrics and the American College of Medical Genetics and Genomics discourage such testing. By testing children, they lose their right to not know and by sharing their results on genealogical or other databases, children also lose their genetic privacy, she says.
Bala argues that parents share their children’s information do so not because they don’t care about privacy, but because they need to be educated about what sharing entails, and she recommends that an educational campaign be started that makes such sharing less acceptable socially.
“The job of parents is to protect and nurture their children to the best of their ability,” she writes in the Times. “This should mean protecting the privacy of their DNA as well.”
