17 Jul All of Us Research Program Aims to Create Diverse Research Data Resource
“Achieving a demographically, geographically, and medically diverse participant community is a top priority for us. That’s because data from a diverse participant community will fill gaps in our scientific knowledge and give everyone the chance to benefit from biomedical research. We’ve spent the last year building relationships from coast to coast with partners who can help us reach diverse communities.”
Dr. Stephanie Devaney, All of Us Research Program Deputy Director and presenter at PMWC Duke, September 2018 -read her full Q&A on the PMWC blog
In the age of big DNA data, it is important to remember that accumulating large amounts of data is not enough. Equally important is keeping the DNA data that participants provide as diverse as possible to allow us to generate answers to questions about how different variables impact people differently. The data we have accumulated so far does not reflect the rich diversity of the United States. The vast majority—81 percent—of participants in worldwide genomics initiatives are of European descent. This results in a drastic underrepresentation of people of other ethnicities, which means that not everyone will be able to benefit from precision medicine to the same way or at the same time. Though diversity in genomics studies is improving, the studies still lack representation: For example, African Americans and Latinos account for 30% of the U.S. population but make up less than 10% of participants in genetic studies.
“We have some big holes in our current understanding of health disparities. We can and we will do better, thanks to All of Us. If All of Us can make it here, we can make it anywhere.”
Dr. Francis Collins, NIH Director, speaking at the Abyssinian Baptist Church in Harlem, New York (see his slides from PMWC Michigan in June 2018)
To create treatments tailored to everybody’s unique needs, and to begin to tackle health disparities, researchers must have access to data about “everybody.”
All of Us Research Program
The lack of data from minority populations highlights the urgent need for a national effort that prioritizes diversity in research, exactly as the All of Us Research Program demonstrates in its plans and execution. The All of Us Research Program opened enrollment in May, and it is actively seeking to enroll members of populations that have been underrepresented in biological research. The program aims to create a research database that reflects the diversity of the U.S. to fill this gap and ultimately enable individualized prevention, treatment, and care for everyone.
Dr. Stephanie Devaney: “We’re building what may be one of the richest datasets in human history and making it accessible to a broad swath of researchers, from citizen scientists to scientists with lots of experience in biomedical research in academia, the private sector, and from all parts of the globe; offering them clean, curated, rich data from a huge, diverse cohort. This will require us to work with participants as our partners all across the country.”
At PMWC 2018 Duke, a dedicated session will focus on the All of Us Research Program and its emphasis on diversity. The program’s deputy director, Dr. Stephanie Devaney, will dive into this subject in a presentation on September 24, 2018. This is a terrific opportunity to get a “real-time” update on the program and learn about the funding details, how people can participate, who is part of the National Network of Inaugural Partners, how we can all join and contribute to the program’s ultimate success, and, of course, how the program will achieve its goal of diversity.