Can the U.S. Get 1 Million People to Volunteer Their Genomes?

May 1, 2018

By Dina Fine Maron

One of the enduring mysteries of medicine is how individual genes, environment and lifestyle may combine to spark sickness or protect us from it. Unraveling this puzzle remains essential for scientists hoping to achieve the elusive goal of offering tailored treatments or personalized prevention plans.

That’s why Pres. Barack Obama in 2015 announced an ambitious plan to roll out a precision medicine initiative that would aim to enroll a diverse group of one million people. Participants would volunteer, either via their doctors or by signing up online, to submit their medical records to the National Institutes of Health. They would also fill out online surveys about their lifestyles, furnish blood and urine samples, and have their genomes sequenced. Later they might also offer other biological data or even wear health trackers that may not yet exist. Researchers—and members of the public—could apply for access to the anonymized patient data and track individuals’ health outcomes, hopefully gleaning insights about how our individual differences affect health and disease risk.

Three years after unveiling that audacious effort—rebranded as “All of Us” about a year ago—it is only now officially getting off the ground. No genomes have yet been sequenced. Instead, federal workers and clinic partners have enrolled “beta testers” in a pilot phase of the project. About 26,000 volunteers have provided blood or urine samples, and filed out surveys about their health care.

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