Wanted: DNA Samples from One Million American Volunteers
National Institutes of Health is seeking potential participants for research — but will they be scared off by recent data breaches?
The National Institutes of Health (NIH) will embark on a massive effort on Sunday, May 6, to enroll 1 million volunteers in its All of Us research program — a huge DNA “biobank” with information including biological samples, genetic data, and lifestyle information, according to Scientific American and other publications.
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. The All of Us program is a component of the Precision Medicine Initiative, begun in 2015 by then-President Barack Obama.
But amid fears of privacy breaches after recent allegations that Facebook allowed a data-mining firm to secretly collect information on at least 50 million users, one wonders if the launch of All of Us is poorly timed at best.
For some, it could seem a little tone-deaf, too, especially in light of the recent heartbreaking death of British baby Alfie Evans five days after doctors in a government-run hospital in the United Kingdom callously unplugged the boy’s ventilator — a painful reminder of what can happen when the government intrudes with impunity in our lives.
The NIH insists it has taken the necessary precautions against would-be hackers, and that the medical data of volunteers has been stripped of identifying information and replaced with coding.
Those close to the project are touting its importance.
“All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,” Health and Human Services Secretary Alex Azar said in an NIH press release. “NIH’s unprecedented effort will lay the scientific foundation for a new era of personalized, highly effective health care.”
With special events planned for “diverse” cities across the country, including Birmingham (Alabama), Chicago, Detroit, Kansas City, Nashville, and New York City, the launch is being met with hoopla and fanfare. Volunteers and fans of the program are also encouraged to support the endeavor via social media.
“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,” said NIH Director Francis S. Collins 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.”
Not everyone is thrilled about the program, however.
Dr. George D. Yancopoulos, president and chief scientific officer of the biotech company Regeneron, said NIH 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, according to an article last month in The New York Times.
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
And after having second thoughts, Oakland, California-based medical provider Kaiser Permanente ended up returning grant money from the NIH. “We felt increasingly that we were just being asked to give access to our members,” Elizabeth McGlynn, Ph.D., vice president of Kaiser Permanente Research and executive director of the Kaiser Permanente Center for Effectiveness and Safety Research, told Becker’s Health IT and CIO Report.
To date, Congress has authorized more than $1.45 billion over a 10-year period for the project.
Also noteworthy is this: In three years since the All of Us program was announced, not a single person’s DNA has been sequenced, according to The Times.
Elizabeth Economou is a former CNBC staff writer and adjunct professor. Follow her on Twitter.