The National Institutes of Health recently launched an initiative to enroll one million volunteers in its All of Us research program — a massive DNA “biobank” of information including biological samples, genetic data, and lifestyle information.
The All of Us program is part of the Precision Medicine Initiative established in 2015 by then-President Barack Obama. According to Lifezette, “Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup –– including their genes.”
Regarding the importance of the All of Us project, Health and Human Services Secretary Alex Azar said in an NIH press release, “All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine. NIH’s unprecedented effort will lay the scientific foundation for a new era of personalized, highly effective health care.”
Special events designed to attract DNA donors are planned in “diverse” cities across the country, including Birmingham, Chicago, Detroit, Kansas City, Nashville, and New York City.
You are invited! Come to Millennium Park, Sunday, May 6th for the launch of the All of Us Research Program! The launch event will last from 11AM to 5PM and will feature community vendors and performances by local groups. #JoinAllofUs #AllofusResearch #NationalLaunch
— UIC_AllofUsResearch (@UIC_JoinAllofUs) April 26, 2018
“The All of Us Research Program is an opportunity for individuals from all walks of life to be represented in research and pioneer the next era of medicine,” NIH Director Francis S. Collins said in the news release. “The time is now to transform how we conduct research — with participants as partners — to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us.”
The NIH acknowledged that there might be public concerns regarding the privacy of those who donate their DNA and insisted that it has taken the necessary precautions against would-be hackers. They also pledged that the medical data of volunteers has been stripped of identifying information and replaced with coding.
The All of Us program is experiencing push back from some of its initial supporters, including Oakland, California-based medical provider Kaiser Permanente, which has already returned to the NIH grant money associated with the intiative.
“We felt increasingly that we were just being asked to give access to our members,” said Elizabeth McGlynn, Ph.D., vice president of Kaiser Permanente Research and executive director of the Kaiser Permanente Center for Effectiveness and Safety Research.
To date, Congress has authorized more than $1.45 billion over a 10-year period for the project, which, in the three years since its inception, has not sequenced one person’s DNA.