Utah lawmaker wants more privacy protections for DNA database users

Editorial note: This story has been edited from its original version to correct an inaccurate characterization of the bill in its draft form and to clarify that some of the provisions around privacy are already in place. 

SALT LAKE CITY — A Utah lawmaker is considering adding more protections for consumers to the state’s laws that protect the privacy of people who submit DNA samples to genetic genealogy databases. 

Sen. Todd Weiler, R-Woods Cross, sponsored the bill signed by Gov. Spencer Cox into law last year that gives users of those sites more of a say over what happens to their data. It’s an attempt to balance the needs of police, who see investigative genetic genealogy as a possible tool in identifying DNA from crime scenes, and the privacy concerns of the public, who may not realize their DNA is used in that way. 

Weiler used the example of someone uploading a DNA sample to a genetic genealogy site to determine their risk for Alzheimer’s Disease. 

“20 years later, they’re looking to solve a crime that your second cousin, who’s never met you, has committed. But because you opted into this database with your Alzheimer’s search, now the police can nail him,” Weiler told KSL NewsRadio on Friday night. “If you’re on the law enforcement side of the fence, you’d say, ‘Wonderful, we’re going to catch a criminal.’ But if you’re on the privacy side of the fence… ‘I’ve never met this person before, she’s like my aunt’s cousin or whatever, how could she have made me opt in?'” 

Weiler said it’s a tough balancing act. 

“We want to solve crimes, but also we don’t want to trod over everyone’s privacy interests. And that’s the needle we’re trying to thread,” Weiler said. 

DNA databases and your privacy 

Last year’s bill requires sites to provide opt-in and opt-out language for users. In other words, those sites must allow users to decide whether law enforcement agencies can access their DNA. 

This year, he has filed draft legislation to put some more guardrails in place for privacy. 

“The database companies themselves have made significant improvements and addressed the security issues both internally with a user agreement with those who are working within the law enforcement opt-out sanctions,” Weiler said. 

Weiler said he hopes to protect consumer data without further victimizing the families of crime victims. 

“What I’m interested in is moving forward with genetic privacy data laws that would not further victimize grieving families, but rather provide a better level of protection for their genetic data,” he said. 

Next steps for investigative genetic genealogy

He’s currently studying a similar law on the books in Montana. 

In the meantime, his draft legislation is before the Senate Rules Committee. It will decide whether it advances for further consideration in the 2024 legislative session. 

Weiler said he hopes that victims’ families in the future find a resolution sooner. He also hopes DNA database users can feel confident their privacy is protected. 

“When they finally caught the Sherry Black killer, he said two things. He said, ‘How did you ever find me?’ And ‘What took you so long? I have been waiting for this day for ten years,'” Weiler said. “I think about that a lot and how profound that is.” 

Related:

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• Will your genealogy test data become searchable by law enforcement?
• DA files murder charges in 2010 death of Sherry Black
• How a Utah assault case upended the cutting-edge DNA website that caught the Golden State Killer