STATEHOUSE (Feb. 13, 2025) – The Indiana House unanimously supported State Rep. Kyle Pierce's (R-Anderson) legislation to strengthen privacy protections for consumers using genetic testing services.
Pierce said House Bill 1521 would require genetic testing providers, such as 23andMe and LifeDNA, to obtain consent before using or sharing an individual's genetic data and prohibit providers from sharing identifying information with insurers and employers.
"This bill is focused on making sure Hoosiers have control over their most personal information – their genetic data," Pierce said. "Every consumer should have clear guidelines on how their genetic data and material is used and be able to consent to it or not. This legislation would allow for more transparency and prevent misuse of this confidential material. I'm proud to see this pass the House with bipartisan support."
House Bill 1521 would mandate that providers disclose specific information to consumers who submit biological material for genetic testing, like how it's collected, used and protected. It would also prohibit these companies from sharing genetic data with insurers, data brokers or employers. Any data shared with third-party entities would have to be removed of identifying data like names and addresses so that it cannot be used against the consumer. Examples include raising their insurance rates, limiting their coverage amount or denying their application.
"Protecting genetic privacy not only protects personal security, but also ensures Hoosiers are not unfairly targeted or discriminated against based on their DNA," Pierce said. "This legislation puts safeguards in place to prevent misuse and strengthens trust in genetic testing services."
House Bill 1521 now moves to the Senate for further consideration. To learn more and watch session and committee meetings, visit iga.in.gov.
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State Rep. Kyle Pierce (R-Anderson) represents House District 36,
which includes a portion of Madison County.
Click here to download a high-resolution photo.
PHOTO CAPTION: State Rep. Kyle Pierce (R-Anderson) presents his legislation to protect consumer genetic data on Tuesday, Feb. 11, 2025, in the House Chamber at the Statehouse. House Bill 1521 would require genetic testing providers to obtain consent before using or sharing an individual's genetic data and prohibit providers from sharing identifying information with insurers and employers.
