July 2, 2020
Since its national launch in 2018, AAFSC has been proud to participate in the National Institutes of Health’s All of Us Research Program. The ambitious initiative aims to collect health data from one million or more participants to advance research and transform the U.S. health care system by promoting precision medicine. The program has been working to engage with a participant pool that reflects the true diversity of the country, and hopes to gain deeper insight into how biology, environment, and behavioral choices impact our health. The hope is that researchers can use this diverse research database to develop more personalized methods for disease prevention, diagnosis, management, and treatment.
As a partner in this critical project, AAFSC has worked hard to ensure that the most marginalized community members understand the importance of the All of Us Research Program and join as participants. As an organization dedicated to community health and well-being, we know the value of providing culturally and linguistically competent health care that keeps families healthy, informed, and empowered to make the best decisions for themselves and their loved ones. We are also cognizant of the importance of having diverse participation and data, especially from communities that are historically isolated due to language and cultural barriers. As an agency that works to provide services to many of these groups, particularly in the Arab, Middle Eastern, Muslim, and South Asian communities, we knew we had a responsibility to leverage the trust we built in our community to support this work.
In March 2020, AAFSC experienced unprecedented changes across the organization due to the COVID-19 (coronavirus) pandemic. Much like the rest of our city, country, and world, we hastened to adapt to new social distancing directives, evolving our service provision to best meet our staff and client needs, while the need for our services increased. Not only did we dedicate additional resources to ensure our staff had the appropriate personal protective equipment, but we also quickly moved many of our services to confidential teleconferencing platforms to ensure we were able to balance safety with service for the vulnerable community members who depend on us the most.
On the ground, the troubling effects of COVID-19 on our community are clear. Many immigrants remain on the front line, completing essential work, putting them and their families at disproportionate risk of contracting the novel coronavirus. Many others have lost employment and are facing acute difficulties because of housing and food instability. COVID-19 relief resources have also excluded many documented and undocumented immigrants, throwing their families into economic instability. Finally, for survivors of gender-based violence and families impacted by child abuse and neglect, social distancing and directives to remain home can be frightening and dangerous. These stories tell us which families are bearing the brunt of this crisis and need our help the most.
According to data provided by the City of New York, COVID-19 is killing Black and Latino people in the city at twice the rate that it is killing White and Asian people, in large part because of systemic racism that fosters inequities in access to safe housing, health care, and other critical resources alongside the disproportionate number of Black and Latino Americans who hold ‘essential’ jobs. This paints an urgent picture about the role race, discrimination, and inequities play in public health.
Photo: Angela Weiss/AFP via Getty Images
Still, the information at hand is insufficient. Not enough people, particularly those who live in majority immigrant neighborhoods, have been counted. Since only four groups – Black/African-American, White, Hispanic/Latino, and Asian/Pacific Islander – have been counted in these reports, we know that the information does not provide enough detail. This grouping fails to capture the incredible diversity within New York and, therefore, limits our ability to fully understand who is disproportionately impacted by this public health crisis so that we can better respond in the future.
By collapsing the dozens of unique ethnic groups that inhabit New York City into four broad groups, we are unable to identify whether specific groups are more susceptible to the virus and the extent to which socioeconomic factors influence the impact. For example, the Arab-American community is historically categorized as “White” in the Census, even though their lived experience often differs from their White neighbors. As a result, we do not know how COVID-19 affects this specific ethnic group. More comprehensive data would effectively help community organizations like AAFSC ramp up services to meet community needs by ensuring appropriate financial resources are allocated and would help health care providers understand how best to tailor diagnosis and treatment. In response to this critical need, the program publicly announced in June three scientific activities to help support COVID-19 research.
Through the All of Us Research Program’s goal of precision medicine, collecting this diverse data would be prioritized so that we are more prepared for any future public health emergencies and can keep marginalized communities safe and informed. Since the program’s launch, more than 350,000 participants have enrolled. And more than 75% of those participants represent communities that have been historically underrepresented in biomedical research. Over 52% are from racially and ethnically diverse groups, including MENA communities.
To join this growing group of participants, learn more about this important program, and gain a better understanding of the privacy and security measures the program is taking, please visit www.JoinAllofUs.org/together. Your participation will support the distribution of appropriate and suitable health care for everyone living in the United States.