As concerns grow over what will happen to personal data held by one of the world’s largest genetic testing companies that filed for bankruptcy recently, state Reps. Emily Kinkead (D-Allegheny) and Brian Munroe (D-Bucks) announced legislation to establish new protections for genetic data.
“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. “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.”
Credit: PA General Assembly
Kinkead said the Genetic Materials Privacy and Compensation Act would ensure Pennsylvanians have inherent rights to the use and sale of their genetic material, require any for-profit genetic testing company to get permission from consumers before sharing data with a third party, and assure that consumers are adequately compensated for the use of their DNA.
“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.”
Credit: PA General Assembly
Kinkead and Munroe said the bill was originally inspired by the legacy of Henrietta Lacks, whose cervical cells were collected without her knowledge or consent and then used over decades in hundreds of research studies, including the development of the polio vaccine. Ms. Lacks and her family have never been compensated for the use.
The pair of lawmakers are gathering co-sponsors for the legislation and plan to introduce it soon.