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06/22/2024 10:19 PM
Pennsylvania House of Representatives
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House of Representatives
Session of 2023 - 2024 Regular Session


Posted: March 22, 2023 11:02 AM
From: Representative Emily Kinkead
To: All House members
Subject: Genetic Material Privacy and Financial Compensation for Usage
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.
I plan to introduce the Genetic Materials Privacy and Compensation Act to address the growing need for protection of a person’s genetic materials. My 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. My bill will also ensure that consumers are adequately compensated for the use of their DNA.
This bill was previously introduced as HB 2283 in the 2021-2022 legislative session, with the following members listed as co-sponsors: Hill-Evans, Sanchez, N. Nelson, Zabel, Schlossberg, Kinsey, Madden, Burgos, DeLuca, Isaacson, Bradford, Rozzi, Ciresi, Delloso, Sturla, Diamond, and Shusterman.
With the popularity of at-home genetics testing, we must ensure the DNA of our most vulnerable populations are protected. We cannot allow people to be exploited. Please join me in protecting DNA privacy.  

Introduced as HB812