The struggle to build a massive ‘biobank’ of patient data

March 23, 2018

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, from all walks of life and all racial and ethnic groups, 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.

The All of Us program joins a wave of similar efforts to construct gigantic “biobanks” by, among others, the Department of Veterans Affairs, a British collaboration and private companies like Geisinger Health Systems and Kaiser Permanente.

But All of Us is the only one that attempts to capture a huge sample that is representative of the United States population. “It will be transformative,” said Dr. Francis Collins, director of the National Institutes of Health.

It will also be expensive.

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.

While supporters say the results will be well worth the money and effort, others have begun to question whether All of Us is just too ambitious, too loaded with cumbersome bureaucracy—and too duplicative of smaller programs that are moving much more quickly.

In the three years since the All of Us program was announced, 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% of the program’s target, Dr. Yancopoulos noted, and the investigators have collected only the simplest data, not genetic sequences.

Two large health providers—Geisinger and Kaiser Permanente—both backed away from grants to participate in All of Us.

Geisinger has enrolled more than 180,000 participants in a biobank of its own, and the health system already has years of their medical records. Regeneron is sequencing the participants’ DNA and has completed more than 100,000.

Kaiser Permanente, too, is now far ahead in developing its own biobank. Originally, the company expected that the federal project would profit from Kaiser’s experience with recruiting and data analysis, said Elizabeth McGlynn, vice president of Kaiser Permanente Research.

DeCode Genetics, a subsidiary of Amgen, a biotech company, is working with a biobank of 160,000 people from Iceland. Dr. Sean E. Harper, Amgen’s executive vice president for research and development, says it is hard to imagine the complexity of analyzing the data.

Despite these concerns, All of Us has contracted with scientists at just about every leading university, as well as with companies like Verily, a subsidiary of Alphabet, parent company of Google.

The New York Times has the full story

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