In healthcare, passion alone is not enough
The Black community have a longstanding negative relationship with scientific research, and they are not the ones to blame. Black individuals are justified by their choice to not participate in research studies by autonomy. Their choice, however, is owing to the historical racial injustice of unethical health research. History, present struggles, fear, mistrust, a lack of representation, poor access to healthcare and racism lead Black people to decline research participation. This contributes to health disparities.
One of the most famously commemorated research studies is the Tuskegee Syphilis Study. This study depicts the unethical racial injustice of African-Americans. The Black man’s introduction to the healthcare system was racist, malicious and unethical, as they were involuntary participants in a syphilis study without knowing they were carriers of the disease. The United States Government targeted this population knowing that they were the most vulnerable and the least likely to find out that they had syphilis or had the capacity to seek treatment.
Tuskegee is not just a study done in Macon County. It has become a site of memory in the Black community globally, and its ramifications continue to crash our shores. More specifically, the study reflects the existing need to understand the reasons why African-Americans do not trust the medical community and are reluctant to participate. The modern relevance of the damage Tuskegee has brewed in Black people participating in medical research can be illustrated through the Covid-19 vaccine trials. Although “African-American people make up 13 per cent of the US population, they account for 21 per cent of deaths from Covid-19, but only 3 per cent enrolled in vaccine trials” (Warren et. al, 2020).
We know that Bermuda is not much different, as more than 60 per cent of Bermudians who initially signed up for the vaccine at the very beginning of the pandemic were White, while less than 15 per cent were Black. Looking beyond Covid-19, the lack of the Black communities’ participation in health research plagues all other illnesses such as cancer, diabetes and obesity.
Moral incentives need to be made from the researcher and healthcare professionals to bring Black participants into health research. Black people should make efforts to participate in health research when their needs in the research outlines are met, accommodating them and their community. These needs include representation, location and revision to heal generational scars.
Researchers need to look like the participants. This is a call to Black Bermudians interested in health sciences. Your island needs more Bermudians in healthcare to allow for better healthcare outcomes of the Black Bermudian population. When you can see yourself in your nurse, doctor or any healthcare professional, you are more likely to be receptive to their care, which aids in your healthcare experience and those to come. The location of health research studies can be a powerful tool in gaining Black participation.
A study found that African-Americans do participate in research from projects such as the Community Clinical Oncology programmes and the Minority-based Community Clinical Oncology programmes (Shavers-Hornaday et al, 1997). These programmes have been proven to increase African-American participation in studies and screenings through community physicians going into these spaces with individuals that resemble them, fostering trust (Shavers-Hornaday et. al, 1997).
In Bermuda, Jonathan Makanjuola, a consultant urological surgeon at King Edward VII Memorial Hospital, has most recently made a presentation with similar intentions to create community clinical programmes in our Black communities to begin such work here. Bermudian researchers need to meet Black Bermudians where they are at in order to overcome and move forward from the historical and unethical modern-day themes of the healthcare system.
The same study from Shavers-Hornaday showed that African-Americans can be successfully recruited to participate in medical research when investigators are willing to make the necessary effort. Future researchers should examine respondents’ reasons for participation refusal and noncompliance. When potential participants say no to research, researchers should ask them why and implement their concerns to improve overall African-American buy-in. The same model can be followed in recruiting Black Bermudians for studies in health research.
As a healthcare professional or researcher, your passion cannot be enough. You must be willing to acknowledge the historical implications that affect your patients. As a unit, we can change the healthcare system of Bermuda by bringing the facts and instilling trust back into our people, which aids in our health disparities on the island.
It begins with us.
• Veronica Swan-DeGraff is a recent graduate of AdventHealth Univeristy, where she completed a Bachelor of Science in Biomedical Sciences, Pre-med
Shavers-Hornaday, V.L., Lynch, C.F., Burmeister, L.F. & Torner, J.C. (1997). Why are African Americans underrepresented in medical research studies? Impediments to participation. Ethnicity & Health, 2 (1-2), 31-45. doi:10.1080/13557858.1997.9961813
Warren, R. C., Forrow, L., Hodge, D. A., & Truog, R. D. (2020). Trustworthiness before trust — Covid-19 vaccine trials and the black community. The New England Journal of Medicine, 383(22), e121. doi:10.1056/NEJMp2030033