Submitted by Candice Lucas and Karen Reifenstein, on behalf of the African American Health Coalition
Most people are aware of the infamous Tuskegee Syphilis Study. Between 1932 and 1972, the devastating effects of untreated syphilis among a group of 399 poor, illiterate, black men was studied by the U.S. Public Health Service. These men were never told what disease they were suffering from, or its potentially fatal effects, nor were they offered treatment when penicillin became available 15 years into the study.
These men unknowingly participated in a medical research study that left 128 dead from either direct or related complications of syphilis, 40 of their wives infected, and 19 of their children born with syphilis.
Sadly, this was not the only case of medical experimentation involving African Americans without their knowledge or consent. And, many researchers believe that these unethical studies fostered a legacy of distrust, which remains pervasive among African Americans today, understandably causing many to shy away from participating in medical research.
However, while the fear and hesitation of some African Americans to be involved in medical research is understood, it also comes at a cost to the health of our community.
Despite the atrocities of Tuskegee, and other failed experiments, Common Ground Health’s African American Health Coalition (AAHC) believes we still have an obligation to be involved in medical research. The only way to find effective treatments and cures for diseases is to have representation from all segments of the population. Without our participation, researchers and scientists will not have a full understanding of how to care for certain medical issues which plague our communities.
Often, when we hear of medical research, we immediately think of drug testing, and clinical trials. But, medical research can take many forms, such as surveys, questionnaires, interviews, case studies, and observational trials.
It can also include studies of how well health care is being delivered, or policy studies to ensure that proper steps are being taken to improve community health.
Many of these forms of research entail nothing more than answering a researcher’s questions.
In addition, safeguards, such as Institutional Review Boards (IRBs), are now in place to help prevent experiments like Tuskegee from happening again. IRBs are committees of scientists, non-scientists and community members that decide whether research proposals meet specific standards, regulations and policies. IRB members have different kinds of knowledge, experience and backgrounds to ensure that their decisions are well-informed and objective. IRB committees review, approve and monitor human research activities in health care environments. This includes reviewing all consent processes to ensure that potential participants make an informed decision about participating in a study, including the right to leave a study at any time without consequence. IRBs and community advisory boards are always looking for individuals to serve as community members.
The AAHC believes that we not only have an obligation to be involved in research to ensure the best health outcomes for African Americans, but that we also should be involved in every aspect of a research study, from design to implementation. We need to inform, question, review, and monitor the research to make sure that another Tuskegee-type study is never repeated. While we have the responsibility to hold researchers accountable for their actions if ethical standards are not upheld, we should always keep in mind that participating in research studies can ultimately improve our health, and our well-being.
Candice A. Lucas, MBA, is chair of the African American Health Coalition, which is convened by Common Ground Health. She is also director of community health services, and the cancer services program of Monroe County at the URMC Center for Community Health. Ms. Lucas directs the operations of multiple community-based outreach programs aimed at improving the health status of Monroe County residents.
Karen Reifenstein, Ph.D., RN, is currently at the University of Rochester in the School of Nursing as an assistant professor of clinical nursing, education coordinator in the Center for Lifelong Learning, professional career coach in the Center for Academic and Professional Success and faculty diversity officer. Her research interest is breast cancer among African American women, and health disparities among minority populations.