Over the years, there have been growing concerns about medical research failing to cover or explore diverse groups of people. But in a world where healthcare is not just one-size-fits-all, how can we best ensure that everyone is getting the best and most targeted medical treatment? According to an article from Timothy Pratt in the Atlanta Journal-Constitution, the “All of Us Research Program” spearheaded by the National Institutes of Health (NIH) is working to diversify medical research, include those who have been historically excluded, and provide better health for people of color and other excluded groups.
“All of Us” Research Program
According to the All of Us Research Program website, the program hopes to
[create] a resource that allows researchers to conduct thousands of studies on health and disease. We expect the program to last at least 10 years, and we hope you’ll stick with us throughout the study.
Currently, this program has over 500,000 participants signed up, with an ultimate goal of 1,000,000. Program enrollment is open to any adults (aged 18+) within the U.S. regardless of race, sexual orientation, gender, or ethnicity. Those enrolled do not have to have health insurance to participate. The program is also open to those who do not speak English or those who have long-term health issues.
Ultimately, the goal of the program is to help underrepresented communities and peoples to be able to contribute medical information to research. Underrepresented groups include those who are Black, Latino, Asian-American or Pacific Islander, transgender, gay, or even possibly part of underrepresented rare disease communities. Through contributing their medical and genetic information, researchers are better able to explore diseases and treatments with a wider range of information.
Program Insights So Far
In March 2022, the NIH shared a news release regarding how the “All of Us” program compiled a genomic dataset of nearly 100,000 whole genome sequences. Around 50% of these were from historically underrepresented groups. Given that prior datasets have included up to 90% of data from those of relatively homogenous European descent, this more diverse data has the potential to increase scientific discovery and contribute to better outcomes for patients.
In Georgia, the “Divine Nine” and American Red Cross are working to increase diversity in medical research, from encouraging people to learn more about this program to running blood drives for those with sickle cell disease (SCD). Of course, the “Divine Nine” also share that there is much room to grow in terms of medical research and diverse communities. Given that so many communities have been excluded, many still have some mistrust of the medical community. Therefore, the path towards inclusion and representation also requires acknowledging these problems and finding solutions.
To learn more about the “All of Us” program, or how you can get involved, head here.
