Pa. House Passes Genetic Privacy Bill in Unanimous, Bipartisan Vote
The Pennsylvania House unanimously passed a genetic data privacy bill Tuesday. Amid increased interest in genetic data privacy this year following the 23andMe bankruptcy, Democrats and Republicans came together to vote 203-0 for HB-1530, sponsored by Consumer Protection Committee Chair Danilo Burgos (D).
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Prior to the floor vote on the same day, the House Appropriations Committee voted 37-0 to approve the bill. The Consumer Protection Committee previously cleared the legislation in late October, also unanimously (see 2510290015).
HB-1530 goes next to the Senate. Pennsylvania’s legislative session ends on Dec. 31, but the second year of the 2025-2026 biennium session starts Jan. 7, and bills can carry over from the first year to the second.
Pennsylvania’s proposed Genetic Information Privacy Act would be enforced by the state attorney general and apply to entities that offer direct-to-consumer genetic testing, with researchers exempted. Covered entities would have to provide disclosures and get consent for collecting, using or disclosing a consumer’s genetic data. Additionally, the bill would require informed consent for transferring or disclosing genetic data to third-party researchers. Also, without written consent, covered entities wouldn’t be allowed to disclose a consumer's genetic data to the consumer’s employer or health, life or long-term care insurance companies.
Privacy experts predicted that fallout from 23andMe would likely lead to more privacy regulation and enforcement due to significant public awareness of the event (see 2504100033). The direct-to-consumer genetic testing company came under scrutiny earlier this year when it declared bankruptcy, and it was unclear what would happen to users’ sensitive data (see 2507300063).
Other states that passed genetic privacy laws this year include Texas, Florida and Indiana, while Montana updated its 2023 law (see 2508080054). However, Nevada Gov. Joe Lombardo (R) in June vetoed a Democratic bill on the subject (see 2506110024).