For three years, the NIH has been trying to build a biobank containing personal health information plus DNA analyses for one million U.S. citizens. However, not a single person's DNA has yet been sequenced. This NIH project was discussed in a recent article in the NYT (see: The Struggle to Build a Massive ‘Biobank’ of Patient Data). Below is an excerpt from the article:
This spring, the National Institutes of Health will start recruiting participants for one of the most ambitious medical projects ever envisioned. The goal is to find one million people in the United States...who are willing to have their genomes sequenced, and to provide their medical records and regular blood samples. They may choose to wear devices that continuously monitor physical activity, perhaps even devices not yet developed that will track heart rate and blood pressure. They will fill out surveys about what they eat and how much. If all goes well, experts say, the result will be a trove of health information like nothing the world has seen. The project, called the All of Us Research Program, should provide new insights into who gets sick and why, and how to prevent and treat chronic diseases....But All of Us is the only one that attempts to capture a huge sample that is representative of the United States population....In 2017 alone, the budget for All of Us was $230 million, of which $40 million came from the 21st Century Cures Act. Congress has authorized an astounding $1.455 billion over 10 years for the project.
In the three years since the All of Us program was announced [in 1915] (see: All of Us (initiative), not a single person’s DNA has been sequenced. Instead, project leaders have signed up more than 17,000 volunteers as “beta testers” in a pilot phase of the program. They supplied blood and urine samples, had measurements taken, and filled out surveys. Dr. George D. Yancopoulos, the president and chief scientific officer of the biotech company Regeneron, said the N.I.H. did not have much to show for three years of planning. Regeneron has been deeply involved in similar public and private efforts, sequencing the DNA of more than 300,000 participants. The beta testers constitute just 1.7 percent of the program’s target, Dr. Yancopoulos noted, and the investigators have collected only the simplest data, not genetic sequences. “At this rate, when will they complete their one million-person target?” he wondered. “And at what taxpayer cost?” ....“Should the funding instead go to individual researchers who are doing truly basic and innovative science?” Two large health providers — Geisinger and Kaiser Permanente — both backed away from grants to participate in All of Us. David Ledbetter, executive vice president and chief scientific officer of Geisinger, said that the program’s complexity made it too time-consuming: conference calls upon conference calls, meetings upon meetings, without much progress.
It's obvious that there is a continuing problem with the proposed NIH "All of Us" biobank. Both Geisinger and Kaiser Permanente have backed away from the project but not quietly. Here's a quote from Geisinger's chief scientific officer David Ledbetter: "the program’s complexity made it too time-consuming: conference calls upon conference calls, meetings upon meetings, without much progress." It was obviously risky for him to say this but it must be counted as a heartfelt complaint.
It's time for the NIH to take a hard look at its biobank project to determine whether its salvageable. Geisinger and Kaiser are two of the most innovative health systems in the country. If they have "called it quits" on the All of Us biobank, I doubt if any other health systems will choose to participate. Such hospital participation is necessary in order to harvest health data from EHRs for the biobank. It might now be best if the NIH opts to focus more what it does best which is awarding grants and contracts to scientists.
Comments