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NIH Plans to Enroll 1 Million People for Health Database

The agency says it has taken various steps to ensure the privacy of participants’ data. 

May 3, 2018
Catherine Offord

ISTOCK, PEOPLEIMAGESThe National Institutes of Health (NIH) is planning to enroll 1 million people across the U.S. for a database of genetics, lifestyles, and environmental conditions relating to health. The agency’s “All of Us” program, which will open for volunteer signup on Sunday (May 6), will provide an important tool in the development of treatment and prevention strategies for various diseases, health officials say.

All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,” Health and Human Services Secretary Alex Azar says in a statement. “We look forward to working with people of all backgrounds to take this major step forward for our nation’s health.”

The project has secured $1.45 billion in funding for the next decade, and has already enrolled 25,000 participants as part of a pilot run last year. People will first share electronic health records, blood samples, and information about their lifestyles. Later in the year, researchers will start administering tests for particular genetic variants that may be related to disease risk.

See “Estonia Offers Free Genetic Testing to Residents

Now that enrollment is going public, the agency is keen to assuage concerns about the security of the data being collected. “This is something we thought about,” NIH director Francis Collins says in an live-streamed interview with The Washington Post. “We knew this was going to be an issue in getting people comfortable.”

While no database is 100 percent secure, the data will be carefully protected, the project’s director, Eric Dishman, explains. The agency has invited hackers to try to breach the database, he adds, as a way to better develop privacy measures. And, according to Collins and Dishman, the information would be inaccessible to law enforcement, even with search warrants and subpoenas, the Post reports.

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However, lawyer Tiffany Li of Yale Law School expresses skepticism that the data could be shielded from access by law enforcement in all cases. “I would argue that there probably is some way to access the data,” she tells the Post.

If the project succeeds, the database will be the “largest, most diverse resource of its kind,” and will help doctors move toward a patient-specific approach to medical treatment, according to the NIH statement. It’s “a national adventure that is going to transform medical care,” Collins says in the interview. “One-size-fits-all is far from an optimal strategy.”

See “Learning from Iceland’s Model for Genetic Research

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