Kinkead introduces legislation to protect DNA privacy

New bill would require consent, compensation for use and sale of genetic material

HARRISBURG, Jan. 25 – Today, state Rep. Emily Kinkead, D-Allegheny, introduced the Genetic Materials Privacy and Compensation Act to address exploitation and privacy concerns associated with the rise of at-home genetics testing.

“Selling data has become a big business, and quite a lucrative one,” Kinkead said. “People who provide genetic data to a company should have to be notified if their data is being sold and receive a piece of the profit their data generates.”

With the GMPCA, which is H.B. 2283, Kinkead aims to create more transparency in what the harvested data is used for and secure financial compensation for individuals when their data is used for profit.

“Many Americans who used at-home genetics tests signed a vague agreement that relinquished data rights to their own genetic material, while under the impression that any alternative use would further non-profit medical research. People are often unaware their DNA is likely to be sold, for profit, to data collection and research companies. In other words, they are being exploited to enrich private corporations. Learning details about your family history is great – but it shouldn’t come at the cost of the rights to your personal and genetic data.”

Kinkead likened the misuse of data from at-home genetic tests to 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.

“While Ms. Lacks’ HeLa cell line helped save countless lives through medical and scientific research, her rights were violated and neither she nor her descendants ever received a dime of the massive profits generated from her contribution. This legislation is crucial to prevent other people from being exploited in the same manner as Ms. Lacks,” Kinkead said.

The bill has garnered bipartisan support from 17 co-sponsors and will soon be referred to a House committee.

Learn more about the data practices of genetic testing companies through this link: Privacy Problems of Direct-to-Consumer Genetic Testing | DNA Tests - Consumer Reports.