In late April, news broke that police used a public genealogy database to identify a suspect in the “Golden State Killer” case. Police accessed a website where individuals share their genetic test results in hopes of finding family members, but used a pseudonym to upload data from a rape kit. Extensive news coverage of the investigation raised questions about privacy and the ethics of using consumers’ own shared data (rather than police databases) for law enforcement purposes.
This also happened to overlap with the publicity run-up to the NIH’s “All of Us” program launch. Efforts to get more people’s DNA (particularly people of color) and health information into massive databases, both public and commercial, suddenly seemed more problematic. Some in-depth reporting and series on direct-to-consumer (DTC) genetic testing, seemingly in the works for some time, suddenly had a major news hook.
Several pieces explored the privacy implications of genetic ancestry testing, particularly when sharing your own genetic information also exposes relatives up and down your family tree. As USA Today warned readers, ancestry testing might make you a “genetic informant” on your relatives.
Others detailed the various ways companies might be using—and making money off of—the genetic data you pay them to produce. Ancestry's history and business practices received particular scrutiny. Facebook’s misuse of personal data seemed an apt comparison for some reporters, while others wondered what a “secretive Google subsidiary” was doing with Ancestry’s massive trove of DNA data. For those who were sufficiently freaked out, Business Insider explained how to delete your DNA from a few companies’ databases.
A few wondered where else your DNA might be available for law enforcement to find, highlighting the murky privacy protections surrounding genetic information in medical or research databases, and the blood and other tissue samples saved by hospitals after they run tests.
Serious skepticism also emerged about what consumer DNA testing could actually tell you. Some questioned the accuracy of DTC genetic test results for ancestry and health, while others highlighted the more ridiculous tests on the market. Orig3n was hit with particularly egregious stories of test results returned for dogs and tap water.
This flood of coverage is making it clear that that we are collecting more DNA testing data than consumers, genetic counselors, doctors, or researchers know what to do with. It’s even clearer that we haven’t thought through the implications of making this data available. But it’s very encouraging to see media coverage connecting the dots and raising these questions.