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Catch up on coronavirus stories and special reports, curated by Mike Allen everyday

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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.

Rideshare companies say driver shortage is pushing prices up

Illustration: Sarah Grillo/Axios

It's not just you: Uber and Lyft rides are more expensive, company executives said this week.

Why it matters: Demand for rideshare is roaring back as the economy starts to reopen, but the same can't be said for drivers on the apps. That means fewer cars on the road, causing a supply gap that's pushing up prices.

Pelosi slams GOP leadership's moves against Liz Cheney

U.S. House Speaker Nancy Pelosi. Photo: Al Drago/Bloomberg via Getty Images

House Speaker Nancy Pelosi this week condemned Republican efforts to oust Rep. Liz Cheney (R-Wyo.) as House GOP conference chair.

Why it matters: A number of Democrats have spoken out against attempts to punish Cheney for her criticism of former President Trump, framing the discussion as one essential to the maintenance of American democracy.