01-04-2025
Lawmakers push DNA privacy after 23andMe bankruptcy
Pennsylvania lawmakers plan to introduce legislation aimed at protecting consumers' genetic data as 23andMe's bankruptcy sends shockwaves through the biotech world.
Why it matters: The uncertainty at 23andMe — a household name in at-home DNA testing — has exposed how vulnerable DNA data can be during corporate turmoil. With more than 15 million users, cybersecurity experts fear personal DNA profiles could be sold off like any other asset.
Driving the news: State Reps. Emily Kinkead (D-Allegheny) and Brian Munroe (D-Bucks) plan to introduce the Genetic Materials Privacy and Compensation Act, which would give Pennsylvanians legal rights to control how their DNA is used — and ensure they get paid if it's sold.
Similar legislation has stalled in past years.
What they're saying:"Personal data like DNA should not be treated as a corporate asset that is sold to the highest bidder," Kinkead said.
Zoom in: The bill would establish individual ownership over genetic material, require informed consent before DNA can be shared with or sold to a third party and guarantee compensation if a company profits from a person's data.
Federal protections like HIPAA don't apply to services like 23andMe because users are considered customers, not patients.
Zoom out: California and North Carolina attorneys general have already urged 23andMe consumers to delete their data, though the company insists that data will not be shared with public databases, insurance companies or law enforcement (without a subpoena, search warrant or court order).
