Here, spit into this and we’ll tell you where your ancestors lived.
Such a suggestion would have seemed outlandish a generation ago, but genetic testing has advanced to such a degree that companies like Ancestry and 23andMe can take a saliva sample and analyze your genealogy, while others like Helix can provide you with health information based on genetic testing.
But what happens to that data after those companies have it? Can they sell it to third parties? In the case of Ancestry, 23andMe and Helix, they’ve signed on to a “best practices” agreement on consumer privacy protection, but they’d also like to see it placed in statute.
Sponsored by Rep. Amanda Hemmingsen-Jaeger (DFL-Woodbury), a geneticist by training, HF1520 would strengthen a consumer’s control of their genetic data by requiring separate express consent before any of it is shared, stored or if any DNA is extracted and analyzed.
It would also stipulate that genetic testing companies couldn’t share genetic data with employers or insurance providers, and that data would be deleted from the testing company’s database upon the consumer’s request.
On Monday, the House Commerce Finance and Policy Committeeapproved and re-referred the bill, as amended, to the House Judiciary Finance and Civil Law Committee by voice vote.
“This bill lays out the expectations that a consumer can have for their privacy when it comes to genetic identity,” Hemmingsen-Jaeger said. “And it also lays out expectations for the direct-to-consumer genetic testing company itself. If you lose your license, lose your Social Security card, you can get those back. If you lose your genetic information, you can’t really get a replacement genome.”
Speaking in favor of the bill was Ritchie Engelhardt, head of government affairs for Ancestry.
“This approach has broad bipartisan stakeholder support,” he said. “Since 2021, six states have enacted similar laws. And, aside from Minnesota, 10 other states have similar measures in progress this year.”
But Natasha Chernyavsky, legislative and policy specialist for the Citizens’ Council for Health Freedom, expressed concern the bill would still allow companies to use “deidentified data,” which is no longer linked to the individual from whom it was collected. She recommended adding written consent specific to deidentification in the bill, and giving consumers access to information on how often and with whom it was shared.
“This bill makes it possible for the public to understand what they’re getting into,” Hemmingsen-Jaeger said, adding that consumers would have to follow a series of online prompts that help them understand to what they’re consenting.