May 1, 2018

NIH launches massive program to diversify medical research

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.

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Trump threatens to "assume control" of Minneapolis over unrest

Flames from a nearby fire illuminate protesters standing on a barricade in front of the Third Police Precinct in Minneapolis on Thursday. Photo: Kerem Yucel/AFP via Getty Images

President Trump threatened via Twitter early Friday to send the national guard to Minneapolis following three days of massive demonstrations and unrest in the city over George Floyd, a black man who died in police custody this week.

Details: "I can’t stand back & watch this happen to a great American City, Minneapolis. A total lack of leadership. Either the very weak Radical Left Mayor, Jacob Frey, get his act together and bring the City under control, or I will send in the National Guard & get the job done right," Trump tweeted after a police station was torched by some protesters.

20 mins ago - Technology

Twitter: Trump's Minnesota tweet violated rules on violence

Twitter said Friday morning that a tweet from President Trump in which he threatened shooting in response to civil unrest in Minneapolis violated the company's rules. The company said it was leaving the tweet up in the public interest.

Why it matters: The move exacerbates tensions between Twitter and Trump over the company's authority to label or limit his speech and, conversely, the president's authority to dictate rules for a private company.

Updated 2 hours ago - Politics & Policy

In photos: Protests over George Floyd's death grip Minneapolis

Protesters cheer as the Third Police Precinct burns behind them on in Minneapolis on Thursday night. Photo: Stephen Maturen/Getty Images

Cheering protesters set a Minneapolis police station on fire Thursday night in the third night of unrest following the death of George Floyd, a black man who died in police custody in the city, per AP.

The state of play: Minnesota's governor on Thursday activated the state's national guard following violent outbreaks throughout the week, as the nation waits to see if the officers involved will be charged with murder.