What People Are Saying About the All of Us Research Program
Please feel free to use the provided quotes in news features or articles.
“As we start thinking about this in the context of building trust, I think we get back that trust by involving the community. We’re going to do things with you and in fact allow that information to be accessible to you.”
—Robert Winn, M.D., associate vice chancellor for community-based practice, University of Illinois at Chicago; director, University of Illinois Cancer Center; and co-principal investigator of the Illinois Precision Medicine Consortium
“It's one of the largest longitudinal studies ever undertaken. It is ambitious, it is multifaceted, and it is incorporating people from across the nation. It's amazing seeing the number of people from everywhere across the country coming together with ideas representing their communities, representing the people in their neighborhoods, and having a voice, and then reflecting that into the program.”
—Shenela Lakhani, program manager and lead genetic counselor, Center for Neurogenetics at Weill Cornell Medicine
"A lot of the research that we have to date has not been generally inclusive of a variety of groups. And so there are a number of gaps in our understanding of risk factors, treatment responses, or the best approaches for specific populations. As the diversity of the population of the United States continues to increase, our assumptions about what may work for the general population become more and more challenged."
—Francisco Moreno, M.D., associate vice president for diversity and inclusion, University of Arizona Health Sciences
“America is a diverse community, a group of people from different backgrounds, different races and ethnicities, different gender identities, and different ability levels, from all walks of life. So we should have health care that's tailored to individuals based on who they are—not based on select people because they were the ones who were first in line. We have to figure out what works for all of our people, and that's why we need a diverse group of people to participate in the All of Us Research Program.”
—Brian Ahmedani, Ph.D., director of psychiatry research and research scientist, Henry Ford Health System; and co-principal investigator, Trans-American Consortium for the Health Care Systems Research Network
“We're working really hard to make sure that we design a research program that's inclusive of all of the people who live in the United States, because we want the benefits of the research that's being done to flow back to every community within the United States.”
—Megan Doerr, principal scientist, Sage Bionetworks
“What makes an individual unique is a combination of so many things. Certainly a person's genome — his or her genetic ancestry — is critically important, but there is much more, including environmental exposures, cultural issues, personal experience, and many other factors. Together these create a whole much greater than the sum of the individual parts. Now, for the first time, we have the ability to put this all together, and in my mind that's what All of Us is all about — not looking at any one factor, but rather integrating multiple sources of information to paint a larger picture that will vastly increase our understanding of individual health.”
—Bruce Korf, M.D., Ph.D., chief genomics officer, University of Alabama at Birmingham’s School of Medicine; and principal investigator of the Southern All of Us Network
“With all of the information that we’re going to garner from this study, it is going to help with prevention. Prevention is really the key to longevity.”
—Lynda Jackson-Assad, M.D., director of pediatrics, Jackson-Hinds Comprehensive Health Center
“The All of Us Research Program will help democratize the research enterprise by involving more researchers and participants, including those living beyond the reach of academic medical centers.”
—Eric Topol, M.D., executive vice president, Scripps Research; and principal investigator of the All of Us Participant Center
“With a local community presence throughout the country, including medically underserved areas, Walgreens works to improve the health of millions of people every day, representing a cross section of all Americans. Now, through the All of Us Research Program, we can offer people of diverse backgrounds a chance to volunteer in research that may improve the future health of all Americans. Our local community presence and our trusted relationship with our customers and pharmacy patients make us well-suited to help this effort.”
—Pat Carroll, M.D., chief medical officer, Walgreens Healthcare Clinics
“The All of Us Research Program has the potential to greatly enhance how we improve health and treat disease, supporting research studies that may help our medical community get the right treatments to the right people at the right time. I’m most enthusiastic about the collaborative aspect of the program, with so many local and national partners coming together to accelerate medical discoveries to try to give people the quality of life we all desire and deserve.”
—David Wellis, Ph.D., chief executive officer, San Diego Blood Bank
“There's a fairly standard pattern for how people work with data, which arose in the old days, and that is, if you want to work with data, you download a copy and work on it on your local computer. That's fine for small amounts of data. But as the amount of biomedical data in the world grows, that pattern doesn't work anymore. It means that you're copying data every time you want to work with it, and the data lives in many places—which makes it harder to monitor and control what happens to it, and harder to collaborate. So we are taking a very different approach: Instead of bringing the data to the researchers, we want to bring the researchers to the data. That's a fundamentally different approach with a huge number of advantages, and it means we don't just do things the way they’ve been done before.”
—David Glazer, engineering director, Verily
“We know that ensuring participant privacy is job one, and we’re doing everything possible to secure participants’ information. While no company, non-profit, or agency can ever guarantee with 100% confidence that data breaches will never happen, we are taking every measure to avoid such an incident and will respond quickly and transparently if that should occur.”
—Josh Denny, M.D., professor of biomedical informatics and medicine and vice president for personalized medicine, Vanderbilt University Medical Center; and principal investigator, All of Us Data and Research Center
“The ultimate goal of the All of Us Research Program is to collect information to lead to incredible discoveries in biomedical research and precision medicine, but along the way, we are going to transform lives. We are going to provide opportunities for people that historically have not had the opportunity to participate in research, and I think that's a really important part of the program, and something that I feel really honored to get to be a part of.”
—Amy Taylor, regional vice president, Community Health Center, Inc.
Reporters should contact our press team at [email protected] for additional information about the program or to schedule an interview with program leadership at NIH.