STATEHOUSE (April 23, 2025) – The Indiana General Assembly approved State Rep. Kyle Pierce's (R-Anderson) legislation to strengthen privacy protections for consumers using genetic testing services.
In the wake of 23andMe's Chapter 11 bankruptcy filing in March, the company is seeking a sale of its assets, including the mass collection of customers' genetic data. Pierce said this has prompted concerns about data privacy, with customers being encouraged to delete their data and request destruction of samples. Earlier this session, Pierce authored House Enrolled Act 1521, requiring 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.
"I am pleased to see this legislation advance so we can provide critical protections for consumers in an age where personal data is increasingly vulnerable," Pierce said. "Hoosiers' genetic privacy must be safeguarded, and this bill would put necessary protections in place to ensure individuals' data is used responsibly and with their consent, promoting trust in genetic testing services. I look forward to seeing this bill signed into law and making sure our citizens are better protected."
House Enrolled Act 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 could not include 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.
House Enrolled Act 1521 passed the House and Senate with bipartisan support and now heads to the governor for consideration as a new law. For more information, 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.
