Pennsylvania’s House unanimously approved new protections giving consumers stronger privacy rights over their genetic data. The bill requires companies to disclose how DNA information is used and to obtain express consumer consent before sharing or repurposing it. Lawmakers cited recent industry incidents and historic abuses, such as the nonconsensual use of Henrietta Lacks’ cells, to argue for tougher safeguards. Separate legislation would further address compensation and broader misuse of genetic materials.
Pennsylvania House Unanimously Approves Stronger Genetic Privacy Protections
A lab technician processes blood test samples in a laboratory. Photo: Tima Miroshnichenko / Pexels
Genetic testing has transformed what people can learn about their health, bodies and family histories — and it has raised new questions about who controls that deeply personal information.
On Tuesday, the Pennsylvania House of Representatives voted unanimously to grant consumers new privacy rights over their genetic data, responding to growing concerns about how private companies collect, use and share DNA information.
What the Bill Requires
The bill, sponsored by Rep. Danilo Burgos (D‑Philadelphia), would require genetic testing companies to clearly disclose how they use customers’ DNA information and to obtain express consent before repurposing that data or sharing it with third parties. The measure aligns Pennsylvania with a growing group of states: 12 others already have laws addressing genetic privacy.
“It’s past time we recognize the need to safeguard this sensitive information and enable consumers to take back control of how their genetic data can be used,” said Rep. Burgos.
Why Lawmakers Are Pushing Changes
Lawmakers pointed to recent industry incidents — including a data breach and subsequent financial fallout at a major consumer DNA company — that have unsettled customers who entrusted private companies with their genetic material. These events, advocates say, demonstrate how quickly genetic information can become vulnerable when commercial practices outpace legal protections.
In March, Rep. Emily Kinkead (D‑Bellevue) introduced the Genetic Materials Privacy and Compensation Act, which would go further by addressing compensation and broader protections for individuals whose genetic material has been used without proper consent. Kinkead cited the historical case of Henrietta Lacks: cervical cells taken without her consent in 1951 produced the widely used HeLa cell line, yet neither she nor her family were compensated.
“Personal data like DNA should not be treated as a corporate asset that is sold to the highest bidder,” Kinkead said. “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.”
Debate Extends Beyond Commercial Use
Lawmakers are also wrestling with how genetic information should be handled in the criminal justice system. Both chambers have considered proposals to collect DNA from certain suspects at the time of arrest rather than waiting for a warrant — a step that raises civil‑liberties and privacy concerns for advocates and legal experts.
As the legislation moves forward, proponents say the measures aim to restore consumer control over genetic information and to ensure transparency and accountability from companies that handle DNA data.
