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New National Institutes of Health project raises privacy concerns

All of Us, a new project by the National Institutes of Health, is aiming to voluntarily collect medical history from at least a million Americans. With a focus on underrepresented groups in medical research like women and minorities, the project wants to advance precision medicine, but is spurring questions about data collection and privacy. The Washington Post’s Lenny Bernstein joins Hari Sreenivasan for more.

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  • HARI SREENIVASAN:

    The National Institutes of Health held events in seven cities and online today all to sign up one million Americans who will voluntarily share personal medical information. The project is called All of Us and it is raising privacy concerns. But among the ambitious goals to expand the use of precision genetic medicine and to include more minorities and women — traditionally underrepresented groups in medical research. Joining me now from Washington D.C. is Lenny Bernstein who is covering the story for The Washington Post. Give us an idea of how big this project is and what they're trying to accomplish.

  • LENNY BERNSTEIN:

    Sure. This project is probably the most ambitious effort to compile a repository of medical data that's ever been undertaken. They want a million people to give them various forms of information — everything from filling out a survey to allowing them to sequence your entire genome. And they want people from all walks of life, all over the country from different racial groups, ethnic groups and they're taking all kinds of steps to make sure that they get it.

  • HARI SREENIVASAN:

    OK. So what happens with that information once they get it? What are the applications what are the uses? What do they hope they can get from that?

  • LENNY BERNSTEIN:

    The applications are sort of endless at this point. The idea is to foster the growth of precision medicine and precision medicine is tailoring therapies but also preventions and cures, hopefully to your particular set of needs. So the idea would be that we would have this giant repository of information that various researchers could delve into and examine and use, to come up with approaches to all kinds of diseases. It's most easily understood right now in terms of cancer but maybe we'll discover something about asthma or maybe we'll discover discover something about Parkinson's disease that we never knew before we could examine all this data.

  • HARI SREENIVASAN:

    Now in the wake of the Cambridge Analytica scandal that Facebook is facing and other data breaches all over the country in the world, how does the NIH and the U.S. government plan to protect the information that perhaps a million people will give them?

  • LENNY BERNSTEIN:

    Well, from the from the examples that you just mentioned, we know that nothing is completely safe. Everything can be hacked. However, they have taken extraordinary precautions to protect this in their reservoirs of data. They also are assuring you that it can never be used in a law enforcement situation. It can never be used in a judicial situation. Congress passed a law with the eye towards this database and they've included these certificates of confidentiality so no matter what happens even if the information goes online illegally, law enforcement can't use it.

  • HARI SREENIVASAN:

    So this is just weeks after the Golden State Killer was caught using DNA evidence, right?

  • LENNY BERNSTEIN:

    It is. And I think that that is where people are going to have to make their own decision. It's really going to be a personal comfort kind of situation. Some people might say to themselves, you know, I give away more information to Facebook every single day and what do I get for it? Nothing. I get ads and I get to be on Facebook. So if they want my whole genome and they want to give me back the result that may be worth it. Other people might say, you know, we're talking about my electronic medical records, we're talking about my genome, we're talking about my activities, we're talking about my environment and I'm just going to err on the side of caution and not go for it.

  • HARI SREENIVASAN:

    Is there any assurance that the U.S. government's going to give that says we are not going to share this information with any third party. No post, no sort of private corporations or grant institutions that want to have a little peek even at the aggregate sets of data even if it's anonymous?

  • LENNY BERNSTEIN:

    I think that would defeat the purpose. I think those certificates of confidentiality and the protections that were put in place by the U.S. Congress are supposed to keep that from happening. This is supposed to be information that's available to researchers and to the people who participate.

  • HARI SREENIVASAN:

    All right. Lenny Bernstein of The Washington Post. Thanks so much.

  • LENNY BERNSTEIN:

    Thank you.

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