Statement by Josh Denny, M.D., CEO, All of Us Research Program, NIH
One of the guiding core values of the All of Us Research Program is that participants reflect the rich diversity of the country. We established this core value at the very beginning because we recognize that many individuals and communities have been mistreated and abused by or left out of research. These transgressions have contributed to the ongoing health disparities and inequities that continue to harm so many in this country. The COVID-19 pandemic, which has claimed more than 500,000 lives in the United States, has again exposed long-standing differences in health care, access, and outcomes. These realities are stark reminders about why we must always strive to do more to ensure everyone is represented in research.
We also know that without diversity, equity, and inclusion among our researchers, there will continue to be oversights in the research that is produced. But to be truly equitable and inclusive, we must confront the systemic and structural racism that has long affected the health and lives of Black communities and other groups across the country that have been marginalized.
These are issues that confront the entire biomedical research community. Francis Collins, M.D., Ph.D., the Director of the National Institutes of Health (NIH), recently announced an effort to end structural racism in biomedical research through a new initiative called UNITE. As he says in his announcement, “NIH is committed to instituting new ways to support diversity, equity, and inclusion, and identifying and dismantling any policies and practices that may harm our workforce and our science.”
This work is just getting started and needs the important input from all of you. Through a Request for Information (RFI) issued on March 1, 2021, NIH is seeking input from the public and stakeholder organizations. The RFI is open through April 9, 2021, and responses to the RFI will be made publicly available.
At All of Us, we are also having important conversations with our staff, researchers, and participant partners about how to ensure that we continue to take concrete action to address diversity, equity, inclusion, and accessibility in the program. As a first step, we will soon begin recruiting for a new leadership position: Director of Health Equity. We are also developing action plans to make sure we continue to welcome participants from all walks of life into the program and to invite researchers from diverse backgrounds to access the All of Us Researcher Workbench.
I look forward to sharing more in the months ahead. In the meantime, you can learn more about NIH’s efforts, actions, policies, and procedures via a newly launched NIH webpage on Ending Structural Racism aimed at increasing our transparency on this important issue.