Writer Evette Dionne recently penned a very personal yet important article about her own HPV diagnosis for Bustle.
Dionne calls attention to a reality in health science research – the lack of adequate research on health issues specific to minority populations. As interest in population-based medicine delivery grows, funding to study effectiveness of vaccines and other treatments in ethnic minority populations is hard to come by, as are clinical trial participants for these studies. Concerning calls to eliminate health disparities, African-Americans often communicate conflicting messages: Help us now! and No, we don’t trust you!
Memories of medical exploitation are still fresh. In the wake of the Tuskegee Syphilis Experiment hearings, U.S. Congress enacted the National Research Act in 1974 which established guidelines for ethical treatment for human subjects. Today subjects have explicit rights, which include informed consent and the ability to exit a study at any time and for any reason. Scientists often reference this regulation to note improvements, especially when trying to recruit minority audiences to clinical trials. However, when asked what subsequent steps have been taken by the science community to proactively assuage lingering concerns of vulnerable populations, Dr. Janet Stemwedel, Associate Professor of Philosophy at San José State University who studies ethics and scientific processes said “I can’t think of any positive trust-earning step that was taken off the top of my head.”
Blacks and other minorities have valid concerns about being harmed or exploited by researchers. It is not the responsibility of our community to put aside that distrust. Yet, if we want to resolve our healthcare and health outcome disparities we will need to participate in fundamental biomedical research. In order to discover vaccines and treatments that better protect African-Americans, we need to increase our participation in biomedical research as clinical trials subjects, investigators, and on research oversight committees.
African-Americans make up approximately 5% of clinical trial participants (US Food and Drug Administration). Latino Americans make up only 1%. Outreach campaigns have attempted to attract more diverse populations to participate, such as EDICT (Eliminating Disparities in Clinical Trials) lead by the Office of Minority Health, a part of the US Department of Health and Human Services and I’m In Pharmaceutical Research and Manufacturers of America, but the metrics remain low.
With so few individuals from diverse populations participating in clinical trials, descriptions of disease symptoms or recommendations for treatments are biased. We only know how various diseases behave in Caucasian populations. As we learn more about genetic diversity and variation in responses to environmental cues across ethnic groups, we can no longer continue to treat Caucasians as the default or universal patient model. We need to understand the physiological, environmental, and genetic patterns of disease and treatment regimens across the board before we can make good on our promise to deliver quality medicine to all.
African-Americans make up less than 7% of the total US STEM workforce (2011 US Census Bureau American Community Survey); and African-American biomedical researchers make up a smaller portion of that number. Also consider that they are less likely than their White counterparts to get sufficient funding, then you realize that the gap in clinical participation at the investigator level also.
Generally, individual researchers determine their own research pursuits, which are largely informed by personal interests. Specific to establishing public trust, diversity among investigators means having researchers call attention to health disparities and asking questions that are relevant to them and their communities. When the demographic representation of the investigators and clinical trial participants are more similar, research teams should be less likely to overlook the safety concerns of their subjects.
The National Research Act in 1974 also resulted in the creation of biomedical research oversight commissions, Institutional Review Boards. Every research institution, including universities and hospitals, creates a committee that provides ethical oversight for all proposed and ongoing experiments. Each committee includes at least five individuals consisting of scientists, medical professionals, and at least one non-scientist from the community. The non-scientist is often a member of the clergy or the social justice work community.
Institutional Review Boards (IRBs) assess and vet every proposal for human safety and bioethical concerns. IRBs have the power to intercede on behalf of the safety of human subjects and have been the biomedical research community’s primary mechanism in earning the public’s trust. However, most people are unaware of IRBs or how they work to protect the general public.
If we remain minority stakeholders in biomedical research then our health care issues will remain under-studied. With our increased participation at every level, comes better vigilance; and enhanced vigilance is our best defense against ethical infractions.
Dr. Danielle N. Lee is a Biologist and Science Communicator who emphasizes science outreach opportunities to underserved and underrepresented groups. She was recently named as a White House Champion of Change for her work in promoting STEM Access and Diversity to African-American audiences. She is a member of the National Science &Technology News Service, a media literacy initiative to bring more science news to African-American audiences. You can follow her on Twitter at @DNLee5.