Member-only story
Who Profits From the Health Datasets of Patients?
The NIH is building a massive dataset that aims to get a broad range of patients, but there are questions about who will benefit from the medical advances that result
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…
