Narrative

Diversity and representation in biomedical research are paramount to ensuring the health and well-being of all communities. Unfortunately, the Middle Eastern/North African (MENA) community is often underrepresented in research as the population is not considered a minority group based on the U.S. Office of Management and Budget’s (OMB) standards.

Historically, Arab Americans, like many other ethnic groups, have often been overlooked in healthcare studies, and over 90% of participants from large genomics studies have been of European descent.

Fortunately, the Arab Community Center for Economic and Social Services (ACCESS) and its Center for Arab Narratives (CAN) are working to change that. CAN has partnered with the All of Us Research Program developed by the National Institutes of Health (NIH), to help build one of the most diverse health databases in history. The program focuses on ensuring communities who are marginalized and underrepresented in biomedical research (UBR) are included. This type of program is significant for the MENA community and brings positive changes to the field of medicine and the culture of research.

The All of Us Research Program is an exceptional example of inclusivity in federal research and should serve as a model for researchers. The program recognizes that too often, health care is one size fits all, and treatments meant for the “average” patient may not work well for individual people.

By aiming to collect health data from one million or more people from diverse backgrounds, including individuals from all ethnicities, races, and socio-economic backgrounds, it may help researchers better understand why certain people get sick and others stay healthy.  

Currently, more than 50%of enrolled participants are from racial and ethnic minorities, and over 80% are underrepresented in biomedical research. This diversity ensures that research findings are applicable to a wide range of people, including those from the MENA community.

The All of Us program could contribute to the advancement of personalized, precision medicine. The program collects comprehensive health data, including genetic information, lifestyle, and environmental factors, creating a vast database that researchers can use to develop tailored treatments. This approach is particularly important for people of MENA descent, as they may have unique genetic predispositions to certain health conditions. By participating in this program, community members can contribute to research that may lead to more effective healthcare strategies and treatments for our community.

The All of Us Research Program is a transformative initiative that holds immense value for health care, diversity, and representation.

By including a MENA category, translating materials into Arabic, and leveraging community partnerships, this program's commitment to inclusivity and its focus on collecting data from diverse populations are steps in the right direction.

It not only addresses the historical underrepresentation of minority groups but also has the potential to revolutionize healthcare by enabling personalized treatment approaches.

By participating in the All of Us program, members of the MENA community can contribute to the advancement of medical research and ensure that our community's unique healthcare needs are considered. As an All of Us partner, CAN is working diligently to ensure that the MENA community’s presence is prominent in the future of biomedical research. If you’re interested in learning more about the program or would like to participate, please visit joinallofus.org/togetherACCESS

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