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August 23, 2019

NIH to share genetic data with 25,000 study participants

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    NIH on Wednesday announced that it will give the 25,000 participants of its All of Us precision medicine project their genetic testing results, marking the first time a government study has shared individualized genetic data with participants.

    The best resources to guide your precision medicine strategy


    The initiative, called the All of Us Research Program, launched in 2017 and aims to collect biological samples as well as genetic and lifestyle data on more than one million U.S. residents.

    Through the program, NIH hopes to provide researchers with anonymized, open-source genetic data that can reveal population trends and improve researchers' understanding of U.S. population health.


    NIH since 2017 has enrolled 25,000 patients in the pilot phase of the program and 188,000 participants in the program overall.

    The initiative is one of many efforts designed to construct a large collection of biological data, but Eric Dishman, director of the All of Us program, said the program is the first that seeks to capture data on a nationally representative sample of U.S. residents, including minorities who have historically been underrepresented in research. According to Dishman, over 50% of the participants are racial or ethnic minorities. "We will have an unprecedented amount of data at a scale never done before," Dishman said.

    Results coming to 25K participants

    NIH announced Wednesday that it will provide $4.6 million in funding to health tech company Color to provide results and genetic counseling to the 25,000 people who participated in the All of Us pilot program.

    Participants will be able to access their results through an online portal or by calling a 1-800 phone number.

    Participants whose results reveal a genetic factor that could impact their health will be referred to in-depth genetic counseling, which will be offered to all participants in multiple languages, NIH said in a release. NIH estimates that fewer than 1,000 participants will require further genetic counseling.

    Participants will start to receive their data at the end of 2019 or the beginning of 2020, according to Dishman.


    NIH said it is sharing the data to inform participants of any potential health issues and to allow participants to benefit from participating in the project.

    For instance, the data could provide participants with information on their genetic predisposition to certain disease, as well as genetic factors that could impact the effectiveness of prescription drugs.

    The data would mostly benefit participants who are unable to afford more other genomic gene sequencing services, which can be costly.

    NIH in the release said the project will also provide a large, diverse genetic data-set that could help advance precision medicine.

    "There's no other study, particularly at this scale, that has either sequenced or genotyped so many people and has the diversity that we have, that is now going to responsibly return that information," Dishman said (Facher, STAT News, 8/21; O'Reilly, Axios, 8/22).

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