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Doctor discusses health issues with a patient at a community health center. Photo: Joe Raedle/Getty Images

In an effort to get rid of what it calls "one-size-fits-all" medicine, the National Institutes of Health is launching a national research program May 6 that it hopes will attract 1 million people within 5 years from diverse populations to volunteer and help advance personalized medicine.

Why it matters: Researchers have struggled with the lack of diversity in genetic testing databases and in studies and clinical trials for years — that not only affects results but leaves underserved populations with less access to the care provided under those trials. This new program is "going to transform medical care," NIH director Francis Collins predicted at a press briefing Tuesday.

"There are far too many unanswered questions about health disparities that disproportionately affect underrepresented communities."
— Dara Richardson-Heron, NIH chief engagement officer

The details, per NIH:

  • The research program, funded with $1.45 billion over 10 years, will have an open-source access portal available to all scientists starting in 2019. They expect those who base clinical trials on the database to include their results to further "blossom" the program, Collins said.
  • More than 100 organizations have been selected and funded to be regional partners.
  • The program will not only collect and compare genetic sequences, but will look at other factors that affect diseases and mental health like a person's lifestyle and environment.
  • The NIH says personal identifiers will be removed from data and information is protected from law enforcement or other entities via certificates of confidentiality required by the 21st Century Cures Act.
  • Volunteers, for now those 18 and older, may be asked to share data from electronic health records and to fill out online surveys. (Children are expected to be included in the summer of 2019).
  • Some volunteers may be asked to provide blood and urine samples, to share data through wearable devices, or to join follow-up research studies including clinical trials.

Go deeper: STAT describes the initiative here and the Washington Post outlines the privacy issues with databases.

Go deeper

Pandemic may drive up cancer cases and exacerbate disparities

Illustration: Aïda Amer/Axios

Doctors are concerned the coronavirus pandemic is going to lead to an uptick in cancer incidence and deaths — and exacerbate racial, ethnic and socioeconomic disparities seen with the disease.

Why it matters: The U.S. has made recent advances in lowering cancer deaths — including narrowing the gap between different race and ethnicities in both incidence and death rates. But the pandemic could render some of these advances moot.

Scoop: Gina Haspel threatened to resign over plan to install Kash Patel as CIA deputy

CIA Director Gina Haspel. Photo: Win McNamee/Getty Images

CIA Director Gina Haspel threatened to resign in early December after President Trump cooked up a hasty plan to install loyalist Kash Patel, a former aide to Rep. Devin Nunes (R-Calif.), as her deputy, according to three senior administration officials with direct knowledge of the matter.

Why it matters: The revelation stunned national security officials and almost blew up the leadership of the world's most powerful spy agency. Only a series of coincidences — and last minute interventions from Vice President Mike Pence and White House counsel Pat Cipollone — stopped it.

Updated 7 hours ago - Politics & Policy

Coronavirus dashboard

Illustration: Sarah Grillo/Axios

  1. Health: Coronavirus deaths reach 4,000 per day as hospitals remain in crisis mode — CDC warns highly transmissible coronavirus variant could become dominant in U.S. in March.
  2. Politics: Biden says, "We will manage the hell out of" vaccine distribution — Biden taps ex-FDA chief to lead Operation Warp Speed amid rollout of COVID plan — Widow of GOP congressman-elect who died of COVID-19 will run to fill his seat.
  3. Vaccine: Battling Black mistrust of the vaccines"Pharmacy deserts" could become vaccine deserts — Instacart to give $25 to shoppers who get vaccine.
  4. Economy: Unemployment filings explode againFed chair: No interest rate hike coming any time soon —  Inflation rose more than expected in December.
  5. World: WHO team arrives in China to investigate pandemic origins.