National Institutes of Health Director Francis Collins opened a “precision medicine” conference at Duke University on Wednesday by briefing participants about an upcoming, long-term effort to gather health data from 1 million or more people.
The “All of Us” project is one of a growing number of large-scale “cohort” studies that seek to track the health over time of people by the hundreds of thousands, to give researchers data to use in figuring out the causes of disease.
What’ll set the NIH-orchestrated effort apart from the others, Collins said, is that its organizers want to make a point of assembling a “very diverse” group of participants and to “collect data about environmental exposures” that can trigger changes in the human body.
Initial tests of the study’s data-gathering systems are scheduled to begin next week, ahead of a hoped-for full launch sometime this fall, he said.
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If all goes to plan, qualified researchers should be able to start using the data next year, and project should have its one million volunteer participants enrolled by the end of 2022, Collins said.
To pay for the project, Collins indicated that the NIH — the key funder of medical research conducted at Duke, UNC-Chapel Hill and other Triangle universities — is counting on Congress to follow through on the spending promises it made last year when it passed the “21st Century Cares Act.”
Congress’ actions to date suggest the study’s “on a stable pathway and can’t be too easily upset by whatever is coming down the road,” said Collins, a UNC-trained physician and geneticist renowned in medical-research circles for having orchestrated the successful effort to map the human genome.
That comment was as close as the NIH director, who’s been in office since 2009, came to alluding to proposals from President Donald Trump’s White House that call for slashing the agency’s fiscal 2018 budget by about 22.4 percent.
The cut, if passed, would reduce the agency’s budget by $5.8 billion, lowering it to $25.9 billion.
White House officials have said Trump wants to prioritize military spending, weighting the federal budget heavily towards the guns end of the guns-versus-butter spectrum.
The NIH cut would target “duplicative and unnecessary global health research” and the back-end “facilities and administrative” overhead the nation’s universities take from each grant, the U.S. Office of Management and Budget says.
Collins, appointed to office by former President Barack Obama, said he’d accepted the invitation to speak at the Duke conference “thinking I would not be the NIH director” by this point in the new administration.
He said he’d turned in the pro-forma resignation expected of high-level political appointees and learned only on Jan. 18, two days before Trump’s inauguration, that it’d been rejected.
That Collins remains in office irritates 41 Republican U.S. House members who on Monday issued a letter asking Trump to sack him and nominate his own NIH director.
The group included three members of North Carolina’s House delegation, U.S. Reps. Robert Pittenger, R-9th, Walter Jones Jr. R-2nd, and Virginia Foxx, R-5th.
Jones’ and Foxx’s districts include two of the state’s medical schools, operated by East Carolina University and Wake Forest University respectively. Pittenger represents the Charlotte area, where civic groups are lobbying for the establishment of a medical school at UNC-Charlotte.
The letter faulted Collins’s views on embryonic stem-cell research, on the grounds that anti-abortion groups find it too permissive.
But conference organizers at Duke consider Collins a friend and advocate of “precision medicine,” the movement within the medical-research community to capitalize on developments in genomics and big-data number-crunching to prevent disease.
In recent decades, “it would be hard to name anybody who’s had a greater impact on the understanding of human biology and ultimately human health,” said Duke’s former chancellor of health affairs, Ralph Snyderman.