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Bill seeks to protect genetic data privacy

A south Alabama lawmaker is proposing restrictions on how companies who collect DNA samples from consumers seeking information about their ancestry or health can store and share that DNA and related data.

Rep. Chip Brown, R-Hollingers Island, said he is sponsoring the bill after talking to constituents who have shared their DNA samples with companies that then provide them with genetic health profiles and information about their ethnic heritage. But what happens to that information and the DNA next is what concerns Brown.

“The world is moving so fast on issues like this,” he told Alabama Daily News on Tuesday. “We may think we’re doing something innocent, but it could backfire on us.

“We have a right to privacy and we’re trying to guarantee that.” 

The Alabama Genetic Data Privacy Act hasn’t been filed for the 2024 session yet, but Brown said it will require several things of genetic testing companies, including:

  • • Obtain the consumer’s express acknowledgment that a sample and data may be handled by other entities, including third-party contractors;
  • Obtain medical informed consent from the consumer each time the use of the sample or data is retained or transferred for research.
  • Honor a consumer request to access their data, delete account information, destroy the sample and data or revoke any previous consent given.
  • • Prohibit disclosure of consumer data to a governmental agency without express consumer consent in the absence of a search warrant, subpoena, or court order.
  • Prohibit disclosure of consumer data to insurers and employers.

If the bill becomes law, violations would carry civil penalties of up to $3,000.

In June, the Federal Trade Commission brought enforcement action against genetic testing firm for leaving sensitive data unsecured and misleading consumers about the privacy of their information, according to Bloomberg Law

The FTC action focused on both the privacy and security of genetic information. The company was fined $75,000.

Last month, a hacker posted in an online forum offering to sell the names, locations and ethnicities of users of the ancestry service 23andMe users, calling out Jewish people specifically.

“There are so many potential uses (for this information) that could be harmful — discriminatory,” Brown said. “There’s the possibility of your information getting to third parties that you’re not even aware of.”

Several state legislatures this year saw genetic data privacy bills introduced. 

“When you submit your information to these sites, you should have an expectation that private information is going to stay private,” Brown said.

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