The relationship between African Americans and the medical community is one filled with highs and lows. Throughout history, African American women and men have been subject to horrible treatment and involuntary consent, to be used for the benefit of others with no concern for their own well-being. Studies such as the Tuskegee Experiment, the story of Henrietta Lacks and the “father of modern gynecology,” J. Marion Sims, who made advancements for gynecological medicine, thanks to his heinous experimentation on Black enslaved women display the horrendous treatment of Black people throughout American history.
Treatment like this towards the Black community has not stopped, only manifested in different ways such as the disproportionate effects of COVID-19 on minority communities and higher maternal mortality rate for Black mothers. With factors such as these, it is easy to understand the apprehension communities of color feel when going to the doctor. Being overlooked or used without consent are the biggest factors contributing to this tense relationship. Just as there have been blows dealt in weakening this relationship, there is one actively working to strengthen the relationship between the medical field and people of color.
This strengthening is being done through the work of the All of Us Research Program. A part of the National Institute of Health, All of Us was formed in 2015 under the Obama administration, known then as the Precision Medicine Initiative Cohort Program, to tailor medical care to individuals. As of now, the All of Us Research Program works to fulfill the needs of communities usually underrepresented in medical research. The All of Us Research Program accomplishes this with thorough research to address and correct disparities through steps such as: 1. increasing wellness and resilience, and promote healthy living
2. reduce health disparities and improve health equity in populations that are historically underrepresented in biomedical research (UBR)
3. develop improved risk assessment and prevention strategies to preempt disease
4. provide earlier and more accurate diagnosis to decrease illness burden
5. improve health outcomes and reduce disease impact through improved treatment and development of precision interventions
Focusing on the specific needs of demographics plays an essential role in researching and potentially finding cures for an array of diseases and ailments. A diverse participant pool is another contributing factor, as reported from the All of Us website in the data snapshots. Within the region of Southern states, Alabama has the highest number of participants at 18, 160. The participants themselves vary in ethnicity with the highest percentage at 45.9% being white participants and 22.4% being Black participants. The trends continue with gender and age as women represent the larger number of participants at 59.3%.
Diverse participants are crucial to the research of diseases, as evidenced from a 2018 ProPublica analysis, “Black Patients Miss Out On Promising Cancer Drug.” A retired business analyst, 72-year-old Pat Conley, who suffered from the rare blood cancer, multiple myeloma, expressed her thoughts about the importance of research and clinical trials. “If they don’t have African Americans to test it on, how will they know it’s going to work?” she asked. “If it doesn’t help me, it’ll help my children, it’ll help somebody else.”
Sentiments of helping others echoes strongly within the Black community. Other diseases, such as diabetes, heart disease and breast cancer also have a stronger probability of diagnosis for Black people and less outcomes of treatment because of the lack of research data.
The FDA does not require a diverse pool of participants and experimental drugs manufacturers fail to include minority participants. This allows for perpetuating false beliefs and the misunderstanding of the effects or workings of diseases affecting minority communities. Along with the lack of inclusion there are additional hurdles minority communities face, as explained by Dr. Kashif Ali, from the 2018 ProPublica analysis. Dr. Ali, head of research at Maryland Oncology Hematology, explained that he’s often “seen minorities, including African Americans, miss out on trials because of financial hurdles, logistical challenges and their lingering distrust of the medical community due to a history of being victimized by medical experimentation.”
In addition to the varying hurdles and challenges, environments also play a role in health disparities as evidenced by observations from Elizabeth D. Carlson from a 2005 WebMD study. Carlson, a postdoctoral fellow in the division of cancer prevention and education at the University of Texas, explains, “It is not just formal education, but everyday things. It’s being afraid to go out and exercise because you live in a high-crime neighborhood. It’s not having transportation to your health care provider. It’s not having decent fresh fruits and vegetables in the local grocery.”
Mounting health concerns coupled with distrust and the lack of research has resulted in the difficulty of acknowledging the very differences that are vital to understanding our unique health concerns. All of Us has a satellite location at the University of Alabama and is accepting participants from the West Alabama area. Along with the work of research programs such as All of Us and systemic changes, socioeconomic and environmental issues need to be addressed and analyzed for a lasting change to heal the wounds of the past.
Visual/Graphic Idea: Sheet of The Hippocratic Oath with caution tape covering the page