(The Center Square) – Genetic testing has drastically changed what we’re able to know about ourselves and our families. It can inform individuals about their bodies and health and connect them to the past through ancestral lines.
For the past two decades, consumers have been handing over their genetic information to private industry for the chance to make those connections.
Throughout those two decades, both entrepreneurism and technological innovations have outpaced legislation, leading to a landscape in which companies have found lucrative ways to leverage genetic data with third parties. On Tuesday, the Pennsylvania House voted unanimously to grant consumers privacy rights over their information.
“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 the bill’s sponsor, Rep. Danilo Burgos, D-Philadelphia.
Twelve other states have legislation protecting genetic privacy. The language of this bill requires companies to be transparent about the ways they use and requires express consent from the consumer before it can be used in other ways or given to third parties.
It isn’t the only bill that’s been floated this session to address the challenges posed by DNA testing. The data breach and bankruptcy of 23andMe sent shockwaves through consumers who entrusted their genetic material to the company.
Rep. Emily Kinkead, D-Bellevue, put forth the Genetic Materials Privacy and Compensation Act in March. Kinkead highlighted the use of patient Henrietta Lacks’ cervical cells, obtained in 1951 without her consent, for medical research. Though the HeLa cell line developed from her sample is still used today, neither she nor her family were ever compensated for their use.
“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.”
The legislature has also struggled with genetic data as it pertains to the criminal justice system. Both chambers have considered the prospect of obtaining DNA samples from certain crime suspects upon arrest rather than waiting to obtain a warrant.
