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NIH Wants Your Medical Data

Agency kicks off massive effort to promote diversity in health research

all of us research program,multiple photos of people from diverse ethnicities put together in a collage

Courtesy the National Institutes of Health

The new program is kicking off a massive public-awareness campaign on May 6, hoping to encourage as many people as possible from diverse backgrounds to participate.

For decades, medical research has meant scientists studying men, usually white men, even though health issues affect women and various races and ethnic groups differently. The National Institutes of Health’s new All of Us program wants to change this with a wildly ambitious goal: to collect personal health information from 1 million Americans of diverse backgrounds so that scientists can begin to understand the distinct health needs of different people. 

It’s a concept known as precision medicine, and something we desperately need, says program director Eric Dishman. “It’s really what our health care system doesn’t have today — a way to say, ‘Given where you’ve lived and where you’ve worked and your genetics and your medical history ... how do we treat you as a unique individual?’ ”

“This will help change health care from one size fits all,” says Jane Delgado, president and CEO of the National Alliance for Hispanic Health, which is involved in the effort to encourage Hispanics to participate in All of Us. "Hispanics live longer than non-Hispanic whites and have less heart disease," for reasons still unclear, she observes, yet "historically, Hispanics haven't been involved in studies because they haven't been asked." 

The program is kicking off a massive public-awareness campaign on May 6, hoping to encourage as many people as possible to sign up. Participants, who can be healthy or have a long-term medical issue, must be 18 or older (a goal is to add children by next summer). To sign up, go to joinallofus.org; the site walks you through the process with a series of videos, then asks you to consent to sharing your electronic health records and answer questions about your life history and health status. 

Some participants may be invited to visit a clinic to have simple physical measurements taken, such as height and weight, and to contribute blood or urine samples for eventual genome sequencing. You can share as little or as much of your personal information (or bodily fluids) as you want throughout the process, Dishman says. 

Almost 45,000 people have signed up already or are in the process of doing so. Program leaders hope to reach the million-person goal within five or six years, and consider this a long-term — as in many-decades-long — project, similar to the famous Framingham Heart Study, which has been ongoing since 1948.

Some people are wary of sharing their medical information, Dishman realizes, but he points out that the program uses a securely encrypted data-collection system and that the payoff is big — for both participants and society. “The more you donate over a period of time, the more valuable it is to you," he says, "because we can give you back health information that is more relevant to you.” And you can express your willingness to be contacted if researchers need participants for a study or clinical trial that’s related to your illness. 

Most important, Dishman adds, your information might contribute to future health care advances. “It's safe to say, every single one of us today has benefited from generations in the past donating to medical science. I think we need to step up and do the same for the next generation.”

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