“Genetic privacy” is a complicated concept, and a new study finds that decoding how people feel about the idea is equally complex.
Genetic data can be collected for medical purposes, like genetic testing for hereditary diseases, by the government for identification purposes, or submitted to private companies that promise to tell you more about yourself and your ancestry. But increasingly, researchers are realizing that people’s expectations for how their data might be used aren’t lining up with reality.
For a study published today in the journalPLOS Oneresearchers analyzed 53 studies (covering over 47,000 participants) that looked at how the general public, professionals, and patients viewed genetic privacy. The results paint a complex picture, says study author Ellen Clayton, a professor of law and health policy at Vanderbilt University. If you ask people “are you worried about genetic privacy?” most will say yes. But if you ask a patient whose genetic data was collected for medical testing about a more specific situation, like “are you concerned about sharing data with third parties?” the answers can vary widely.
Security has more to do with the methods used to keep information private, like sending sensitive medical documents through unsecured email versus keeping it on a computer that isn’t connected to the internet. This was the issue at play in June, when hackers breached 92 million accounts from the ancestry site MyHeritage (though they never reached member’s genetic information). Control is about policies regarding sharing information with third parties, such as when 23andMe shares data with pharmaceutical companies like Pfizer.
“To get insight into how people actually feel, it’s important to ask them what particular outcomes they’re worried about,” says Clayton. For future studies and surveys, she recommends that instead of asking about “genetic privacy,” researchers should break the issue into different parts. That way, we’ll all have a better idea of what people want, so we can better respect their wishes.