Latest news with #GeneticMaterialsPrivacyandCompensationAct
Axios
01-04-2025
- Business
- Axios
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).
Yahoo
27-03-2025
- Business
- Yahoo
Pennsylvania lawmakers announce bill to protect genetic data
(WHTM)– Pennsylvania lawmakers have announced a bill that would establish new protections for residents' genetic data. One of the world's largest genetic testing companies, 23andMe, filed for bankruptcy on Sunday, leaving many customers concerned about where their personal data will end up. Close Thanks for signing up! Watch for us in your inbox. Subscribe Now State Representatives Emily Kinkead (D-Allegheny) and Brian Munroe (D-Bucks) announced a bill they say will better protect Pennsylvanians. The Genetic Materials Privacy and Compensation Act aims to ensure that Pennsylvanians have inherent rights to the use and sale of their genetic material, according to a release from Kinkead. 23andMe has filed for bankruptcy. What does this mean for your DNA data privacy? The bill would require for-profit genetic testing companies to get permission from consumers before sharing data with a third party and ensure people receive compensation for the use of their DNA, per Kinkead. 'The bankruptcy of 23andMe is exacerbating the data privacy nightmare of tens of millions of Americans who entrusted the company with their genetic material,' said Kinkead, D-Allegheny. 'Personal data like DNA should not be treated as a corporate asset that is sold to the highest bidder. Situations like this are a huge wake-up call that the genetic data of Pennsylvanians will remain vulnerable to exploitation until we strengthen our laws around data privacy through legislation like the Genetic Materials Privacy and Compensation Act.' Kinkead says the bill draws inspiration from Henrietta Lacks, whose cervical cells were collected without her consent and used to develop the polio vaccine and were used in hundreds of other studies. Close Thanks for signing up! Watch for us in your inbox. Subscribe Now The State Reps plan to introduce the legislation soon. 'Our legislation reflects what people already know – that the information contained in their DNA belongs to them, and them alone,' said Munroe. 'While 23andMe's recent bankruptcy filing highlights the challenges some companies in this space face, the broader genetic testing industry remains highly profitable, with companies continuing to make substantial profits from selling genetic data to research and pharmaceutical firms. This bill ensures that people are notified before their genetic data is sold, that they have the right to approve or disapprove such sale and, most importantly, that they receive fair compensation for its use. It's time for companies to be held accountable and for individuals to regain control over their most personal information.' Copyright 2025 Nexstar Media, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.
