NIH Seeks One Million Volunteers For Medical Database

The National Institutes of Health has begun recruiting volunteers for a $1.46 billion medical database that will eventually comprise data on more than one million people, an effort to discern the genetic underpinnings of a range of diseases and even of healthy ageing. The endeavour by the nation’s leading government medical-research entity is aimed at deciphering the workings of poorly understood maladies ranging from cancers to migraines to dementia. The database will be open to medical researchers and will initially consist of data on volunteers age 18 and up, regardless of health status. Children will be eligible beginning in 2019 if their parents or guardians consent. The program called All of Us has already enrolled more than 25,000 people in its pilot stage but will be recruiting more in communities large and small in public events beginning Saturday in New York, Chicago, Detroit, Birmingham, Ala.; Kansas City, Mo.; Nashville, Tenn.; and Pasco, Wash. People interested in participating can gain access to these events through a website—that explains the purpose of participating in genetic research.

Francis S. Collins, a prominent geneticist and the NIH director, has been advancing the idea of such a genetic databank for years, even before assuming the agency’s top post in 2009. It won’t be the first genetic-research database, but it hopes to become the largest and most diverse, reaching more than one million people within five or six years. “This is among the most ambitious research projects our nation has undertaken,” Dr Collins said in a telephone call Tuesday with reporters. He and colleagues stressed that the effort would make extensive forays to recruit people normally underrepresented in medical research—and thus often less able to benefit from its findings. The NIH effort follows other such large genetic-data-gathering efforts by the U.S. Department of Veterans Affairs and private entities such as Geisinger Health Systems and Kaiser Permanente. Geisinger executive vice president and chief scientific officer David Ledbetter said the NIH database “is going to be incredibly valuable.” But he said Geisinger opted not to participate because it would have duplicated Geisinger’s work to a great extent. “They could have designed it to take advantage of existing data,” he said.

Some in the medical community questioned the need for the project. “There are currently 50 genetic databases out there. What’s the 51st going to say?” said Michael Joyner, a Mayo Clinic anesthesiologist and physiologist. Eric Dishman, who will direct the All of Us endeavour, said he and colleagues envision “over recruiting” among the poor, those with less than a high-school education, people in rural areas and those with physical and mental disabilities, among others. The plan is for the program to be diverse by race, ethnicity, gender, as well as geographically. Mr Dishman said the project would be unusual, too, in the scope of information it hopes to gather—health habits, medical history, and environmental exposure in addition to genetic makeup. The NIH will work with academic and other collaborators who will gather many of the blood and other specimen samples. He said the program has already been meeting with groups that might initially have resistance to participating in such a scientific data-gathering effort. That includes the Hispanic community, many of whose members feel under pressure from the Trump administration’s immigration policies. In the wake of the criminal investigation in which genetic data led to the capture of the alleged Golden State Killer, Mr Dishman and others at the NIH stressed that participants’ information would be held in strict confidence. He said that researchers who participate in the venture were prohibited from disclosing identifiable, sensitive information even under legal demands such as subpoenas.

Credit: Thomas M. Burton for The Wall Street Journal, 1 May 2018.