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An ambitious attempt to make medical research not so white

National Institutes of Health funding has been flat for years.
National Institutes of Health funding has been flat for years.

In an attempt to greatly expand the diversity of participants in research into precision medicine and other areas, the National Institutes of Health has launched a 10-year plan to collect the biological, health and environmental information of at least 1 million Americans, particularly people of color.

Against a historical backdrop of medical research that often focused on white males, the "All of Us" campaign seeks to recruit a geographically, demographically and medically diverse population.

"Participants will reflect the rich diversity of the United States," said Dr. Dara Richardson-Heron, the effort's chief engagement officer.

Such a plan would have been a "pipe dream" 15 years ago, according to NIH Director Dr. Francis Collins.

"If this sounds ambitious, that’s because it is," he said. "All of Us is among the most ambitious research efforts that our nation has ever undertaken."

The data project doesn’t take aim at one particular disease, but is to be a repository for information that will develop precision medicine for more Americans. Collins said medicine needs to move beyond using the same treatments for everyone with a particular condition.

"One size fits all is far from an optimal strategy," he said.

The project’s data will be open to researchers across the country looking to recruit people to specific health studies that might benefit them.

José Callejas is one of 27,000 people across the country who joined the project as part of its beta test group. He has since been trying to recruit his mostly Latino coworkers in the L.A. County Beaches and Harbors department.

"I think that I can make some difference by asking them to get involved in this," said Callejas.

He said he wanted to be a part of the future of innovation treatment, especially since his wife has been through radiation and chemotherapy for breast cancer.

The All of Us campaign will work with community organizations and clinics to reach out to potential participants.

USC's Keck School of Medicine is a key local player in the effort, and it's well positioned to conduct outreach to diverse communities, said preventive medicine researcher Dr. Daniella Meeker. Lessons USC has learned from outreach projects in diverse L.A. communities will help the rest of the country, she said.

There are cultural barriers to attracting research volunteers from non-white communities.

Abusive research efforts have targeted communities of color, like the Tuskegee syphilis study that tracked the progression of untreated syphilis from the 1930s to the early 1970s in subjects who believed they were receiving treatment.

"In some cases, research transgressions of the past have made many people skeptical about and even hesitant to take part in research, and with good reason," said Richardson-Heron.

That’s why outreach is important on this project, she explained in a call with reporters.

"We certainly cannot allow errors of the past to prevent people from benefiting from what we know will be future biomedical advances," said Richardson-Heron.