Treating ‘genetic privacy’ like it’s just one thing keeps us from understanding people’s concerns

“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 journal PLOS One researchers 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.

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