Abstract
Chris Anderson, Editor in Chief
You can be forgiven if, over the past couple of years, a bit of skepticism creeped in whenever you heard about the National Institute of Health's All of US research program. Since it was announced by President Barak Obama as the Precision Medicine Initiative in 2015 with the declaration “I want the country that eliminated polio and mapped the human genome to lead a new era of medicine,” progress has been plodding.
Recruitment of both participating enrollment sites and individual participants was excruciatingly slow. So slow that the initial beta enrollment period in 2016 and 2017 attracted only half the participants the program projected. An extended beta effort in 2017 meant a further delay in open enrollment for the program. Remember, when it was first announced, government officials believed that open enrollment would commence in 2016.
As ambitious a program as All of US is, looking to collect genomic and other health data from at least 1 million US residents, it's fair to say the original time-line was overly optimistic. Recent news, however, indicates that the program is now finally beginning to hit its stride.
Open enrollment officially launched in late spring of last year. In addition to providing blood and urine samples, participants are asked to complete a health and lifestyle survey and provide access to data from their electronic health records (EHRs)—all with an eye toward developing a genotype-pheno-type profile of enrollees.
In an update released in August, All of US said that it had now enrolled 175,000 volunteers, up from a mere 25,000 it reported in May of 2018.
But perhaps more important is the approach being taken by the program in its recruitment efforts. A well-known hindrance to building an equitable precision medicine ecosystem is the lack of diversity in genomic datasets, which is significantly skewed toward people of European ancestry. All of US has recognized how the lack of large datasets of ethnically diverse populations has created an inequality in the ability to deliver precision medicine to patients not of European ancestry and has made recruitment of participants from a broad swath of ethnicities a core element of the program.
According to Edward Abrahams, president of the Personalized Medicine Coalition, collecting this information is “critical. They made a great effort to get diverse populations integrated into the database and without that I think the benefit would be much more limited in its ability to provide the promise of personalized medicine—especially its ability to predict and prevent.”
So while there is still a long way to go to reach the All of US goal of 1 million participants, it appears All of US is finally emerging from its own shadow and is prepared to be a significant resource to help drive precision medicine.