Miriam Gonzalez initially saw the posters around the hospital where she worked. They depicted a diverse range of people that actually represented the American population — not something she usually saw in medical ads.
They were promoting a new initiative by the National Institutes of Health (NIH) called the All of Us program, asking one million individuals to volunteer their medical data, including electronic records and genetic material such as blood and urine, to create an extensive database for research.
“The emphasis was on ‘be the change,’” recalled Gonzalez, one of the early volunteers and now an ambassador for the program. “It really resonated with me as a young person and as someone who has an interest in public health. I wanted to participate in this research process.”
Launched in May 2018, the All of Us program has so far received data from more than 40,000 people.
“We’re creating a resource that is really unique in the scale and availability of data, and really focused on helping with treatment development,” said Joshua Denny, MD, a professor in biomedical informatics and medicine at Vanderbilt University Medical Center, and a research head at All of Us. “A key part of this is a diverse population, because that is really important for discovery, and it’s very scientifically important.”
The program has specific engagement plans for people of color and other marginalized communities, according to Denny, because these populations have traditionally been less represented in research data.
Yet medical ethicists and privacy experts have questioned the security of the system. They want to know how stockpiling this medical data is affecting patient privacy, what the data is being used for, and whether volunteers really understand the implications of sharing their information.