All of Us participants’ contributions make the first genomic dataset possible (Credit: NIH)
This week, the All of Us Research Program hit a new milestone. We released our first set of DNA information from participants into the All of Us Researcher Workbench. The data includes nearly 100,000 whole genome sequences, which involves a process that looks at participant DNA. Nearly half of this new genomic information comes from people who self-identify with a racial or ethnic minority group. Thanks to your involvement, the dataset you helped build is one of the most diverse in the world.
As a doctor and researcher, I’m jumping in my seat thinking through all the things a resource like this will make possible. With this latest update, the data shows a more complete picture of health—the genes a person was born with, the health care they received, and information about how they live their lives. That alone is exciting. But when you consider the diversity in our data, you realize just how unique it is. Worldwide, more than 90% of participants in genome-wide association studies to date are of European descent. This lack of diversity in research has had huge impacts—deepening health disparities and preventing scientific discovery from benefiting everyone.
Our dataset will challenge what we know about health and disease. With the amount of data and diversity we have in our Researcher Workbench, there are new diseases waiting to be uncovered. There are genetic variants to identify that may better predict disease risk. And in the future, it's likely that All of Us data will contribute to the discovery of new treatments.
To speed up discoveries like these, we are making the data available widely and wisely. Already, more than 1,500 scientists across the U.S. have gained access to the Researcher Workbench through their institutions after completing training and agreeing to our rules for responsible use. That’s just the beginning.
As a fellow participant in and CEO of All of Us, I know there are things we can still do better. We started returning genetic ancestry and trait results in late 2020. So far, we have offered results to more than 100,000 participants. We continue to return around 6,000 results each month. But we know that some of you are still waiting to receive your results. Please know we’re working hard to get them to you. If you haven’t received these results, check your All of Us account to see if there are steps you still need to complete.
We are all looking forward to getting health-related DNA results. Returning these results is taking longer than any of us expected, but we are working as quickly as possible. We are going to return results in a meaningful and responsible way. Because we’re a research program and our results look through different areas of DNA and focus on different genetic conditions, we have to do things a little differently than companies you may be familiar with. To do so, we’re building and testing one-of-a-kind systems and processes that include making genetic counselors widely available to you.
We want to make sure we get this right. We’re really excited about the progress we’re making, and we expect to begin returning these results this year. We'll be sharing more updates soon. Keep an eye on our newsletter and social media.
This is a huge milestone for the program and for health research. It would not be possible without each of you.
Thank you,
Josh Denny, M.D., M.S.
CEO of the All of Us Research Program
