In 1951, Henrietta Lacks’ cervical cells were collected without her knowledge or consent. Since then, her unique cell line (HeLa) has been used in hundreds of studies about the effects of radiation, poisons, drugs, viruses, and even played a critical role in the development of the polio vaccine. Neither during her lifetime, nor in the decades since Ms. Lacks’ passing, have she or her family been compensated for use of her cell line or consulted about research decisions involving her cells. While Ms. Lacks’ genes helped save countless lives through medical and scientific research, this situation raises serious concerns about the privacy and use of our DNA. 
  
And as genetic testing becomes simpler and more readily available, these concerns only grow. Many Americans have opted to use at-home genetics testing to study their family history. Some of these companies sell this information, and if a person's genetic material is being used for profit, that person should be notified and compensated. With the recent bankruptcy declaration of 23andMe—easily one of the most prominent companies collecting and storing customers’ DNA information—coupled with the subsequent data crash that occurred as its customers were trying desperately to scrub all of their DNA data and corresponding personal information from the site after the announcement, the risk of exposure and exploitation of so much genetic information has exploded.
  
We plan to introduce the Genetic Materials Privacy and Compensation Act to address the growing need for protection of a person’s genetic materials. Our bill will ensure that Pennsylvanians will have inherent rights to the use and sale of their genetic material. Additionally, this bill will require any for-profit genetic testing company to acquire permission from the consumer before they can share this data with any third party. Our bill will also ensure that consumers are adequately compensated for the use of their DNA.

This bill was previously introduced as HB 812 in the 2023-2024 legislative session, with the following members listed as co-sponsors: Sanchez, Rabb, Kinsey, Isaacson, Madden, Burgos, Ciresi, Shusterman, Pisciottano, Khan, Hill-Evans, Parker, McAndrew, Otten, Cepeda-Freytiz, Hanbidge, Pielli, Samuelson, and Green. 
  
With the popularity of at-home genetics testing and now the threat to the privacy of that information from the bankruptcies of the companies that provide them, we must ensure that privacy in our most fundamental data, our DNA, is protected. We cannot allow people to be exploited. Please join us in protecting DNA privacy.