Building a Massive Biobank of Patient Data

The National Institutes of Health (NIH) will soon start recruiting participants for the All of Us Research Program, an ambitious project to sequence the genomes of 1 million Americans from all backgrounds.

More than 17,000 volunteer “beta-testers” have supplied blood and urine samples, had measurements taken, and filled out surveys as part of a pilot phase, but not a single person’s DNA has been sequenced since the project’s inception three years ago.

Geisinger and Kaiser Permanente, two large health care providers, backed away from grants to participate. Geisinger instead has enrolled more than 180,000 participants in a biobank of its own. Kaiser Permanente also is now far ahead in building a similar trove of data. And they are not alone: The U.K. Biobank, a British program, has 500,000 participants with complete medical records. The U.S. Department of Veterans Affairs also has a biobank, and investigators expect to sequence the DNA of 100,000 of its participants in the next two years.

Congress has authorized $1.45 billion over 10 years for the complex All of Us project, which is designed to overcome the limitations of the other biobanks (e.g., the relatively small number of women in the VA’s Million Veteran Program) by providing a representative sample of the U.S. population. The diversity of participants, however, makes retrieving medical records especially difficult.

The program plans to enlist genetic counselors so that participants can be told if abnormalities appear in their tests and scans – something the U.K. Biobank does not do – and right now there are not enough counselors to handle the task.

Source: The New York Times, March 19, 2018.