23andMe Fallout: Nev. Assembly Speaker Urges Passing DNA Privacy Bill
A Nevada genetic privacy bill responds to the 23andMe bankruptcy and Trump administration misinformation about people with autism, Nevada Assembly Speaker Steve Yeager (D) said Thursday. Yeager urged passage of his AB-589 at a livestreamed Assembly Government Affairs Committee hearing.
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The first half of AB-589 addresses U.S. Health Secretary Robert F. Kennedy's false claims that autism is preventable and his "dehumanizing" remarks about children on the spectrum, said Yeager. The bill would ban state and local governments in Nevada from collecting autism-related data, and from disclosing it to third parties without consent from the covered person or their guardian.
The other side of the bill protects people in 23andMe-like situations, where a DNA testing company goes bankrupt and wants to sell itself and users’ genetic data to another company. “Frighteningly, this could lead to the use or proliferation of customer data far outside its initial intended use,” said Yeager. 23andMe’s buyer Regeneron has promised to maintain users’ privacy (see 2505190047). But lawyers say the FTC's authority to require 23andMe's buyer to honor privacy policies is unclear (see 2505220055).
Among other penalties, AB-589 would make it a category D felony under Nevada law to intentionally sell or otherwise transfer a DNA sample or genetic information without a person or their legal guardian's informed consent, with some exceptions.
At the hearing, Assemblymember Heidi Kasama (R) asked if autism health data wasn’t already protected by the U.S. Health Insurance Portability and Accountability Act (HIPAA). Yeager said his bill would additionally apply to some information not covered by HIPAA, like data from smartwatches and fitness trackers. Also, the speaker said AB-589 would protect Nevadans in the event that the federal government tried to scale back HIPAA.
Privacy advocates warned last month about the dangers of having the federal government collecting medical and health data from citizens after the National Institutes of Health (NIH) revealed plans to compile medical records from commercial and federal databases as part of an autism study (see 2504230047).
Illinois Gov. JB Pritzker (D) signed an executive order May 7 to restrict autism-related data collection and sharing.