Danville, Pa.-based Geisinger Health System and Oakland, Calif.-based Kaiser Permanente backed away from grants to participate in a National Institutes of Health precision medicine program, citing various concerns, according to a The New York Times analysis of the program.
The NIH aims to obtain biological samples, genetic data and lifestyle information from more than 1 million participants for the program, called the All of Us Research Program. The program — which will serve as a national research resource to inform future precision medicine studies — has 17,000 participants enrolled as "beta testers" in a pilot phase of the initiative, which launched June 2017.
The NIH plans to start recruiting participants for the next phase of the program in spring 2018.
It's an ambitious project, in part because the NIH aims to capture representative samples of the U.S. population, including various minority groups that are historically underrepresented in scientific research. In 2017, the budget for the All of Us initiative hit $230 million. Congress authorized a total of $1.45 billion in federal funding toward the program during a 10-year period.
However, some have begun to wonder whether the program's energy and resources have been well-spent, or are potentially duplicative of smaller programs at the U.S. Department of Veterans Affairs and individual hospitals. These programs often move more quickly, though don't have the same focus on national representation, according to The New York Times.
David Ledbetter, PhD, executive vice president and chief scientific officer of Geisinger, told The New York Times the program's complexity is what led the health system to give back its grant, which was worth up to $50 million during a five-year period. He noted participating in All of Us included various time-consuming conference calls and meetings.
"We decided it was not the right expenditure of our time," he said. Geisinger has enrolled 180,000-plus participants in its own biobank project, The New York Times notes.
Officials at Kaiser Permanente, which is also developing its own biobank, voiced separate reasons for returning its grant money. "We were not able to engage as a scientific partner," said Elizabeth McGlynn, PhD, vice president of Kaiser Permanente Research and executive director of the Kaiser Permanente Center for Effectiveness and Safety Research. "We felt increasingly that we were just being asked to give access to our members."
Dr. McGlynn also questioned how feedback would be provided to participants of the program. The NIH plans to enlist genetic counselors for All of Us, however, The New York Times reports there aren't enough counselors for the program's goal of 1 million participants.
"Genetic counselors are in terribly short supply," she said. "We wanted to be sure we were well organized to deliver results in a way that was ethical and not scary to members."
To access The New York Times's article, click here.