Sharon Zehe, J.D., Discusses the Risks of Open-Source Genetic Databases

By Kelley Luedke • May 4, 2018

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A recent TIME article highlighted how the use of open-source genetic databases have been used by investigators to help crack crime cases. Investigators use the databases to find relatives who match genetic material taken from old crime scenes. They then cross-reference family data with evidence and eventually use it to pinpoint and arrest suspects.

According to the article, these open-source genetic databases allow individuals to upload and share their information for free, making it accessible to law enforcement, researchers, and private citizens alike. However, the case brings up the issue of genetic privacy, especially as direct-to-consumer tests become increasingly more popular.

Sharon Zehe, J.D., an attorney for the Department of Laboratory Medicine and Pathology at Mayo Clinic and a genetic privacy expert, urges caution when it comes to these sites. “A DNA sequence is the biometric equivalent of a fingerprint,” Zehe says. “Would they load their fingerprints onto a publicly available database? Probably not.”

While these open-source genetic databases do provide privacy policies that inform users that the database could be used for other uses, it begs the question of whether customers read these warnings. Zehe says she’s seen them become clearer and easier to understand as privacy concerns mount, but stresses that consumers should “be thoughtful about reading privacy policies and understanding how genetic data is shared with third parties.”

According to Zehe, “Genealogy services can be fun, but make sure you are using a reputable organization that has robust privacy policies in place. When in doubt, don’t consent to other uses, or potentially don’t use the direct-to-consumer service at all.”

Kelley Luedke

Kelley Luedke is a Marketing Channel Manager at Mayo Clinic Laboratories. She is the principle editor and writer of Insights and leads social media and direct marketing strategy. Kelley has worked at Mayo Clinic since 2013. Outside of work, you can find Kelley running, traveling, playing with her kitty, and exploring new foods.