How did your industry get started?
My industry got started when the Public Health Services began working with Tuskegee Institute in 1932. The very first study recorded in history was syphilis. In this study, 600 black males, were studied throughout 40 years. During this period, these men were never given adequate treatment. When treatment became, available patients weren’t adequately informed about the extent of the study. In 1972, the study was deemed ethically unjustified and ceased immediately. The patients that participated in this study, including their families, were given reparations. This event was the catalyst to birth the Declaration of Helsinki. The Declaration of Helsinki set the expectations of ethical principles for human experimentation in the medical community. To protect people’s rights, even further patients were required to sign an informed consent document that explains the clinical research.
The safeguards that have been enacted are the main reason that I have the job I have today. What I do ensures the FDA guidelines are followed and those principles are upheld when conducting any medical study.
There is an overabundance of distrust in the black community toward medical professionals because of the Tuskegee experiments. Why is it important for black people to continue to participate in medical research?
Drugs used to be developed in a broad spectrum, one size fits all, and now they are being created more to be precise to genetic makeup. Drugs affect people differently because of the individual’s genetic makeup. Black people typically refuse participation in medical research studies due to the negative stigma of previous experiences. Regardless if black people participate in research trials, drugs are still being created without knowing the effects the drugs could potentially have on black people. With 90% of medical research being conducted on white people, there is insufficient data on how these drugs can affect black people.
Black people wind up getting a prescription for a drug that can hopefully treat a condition, but could also be ineffective, or have adverse side effects. It is critical for people of color to get involved in clinical research as a patient, or investigator. Our young people need to understand how the profession works, as well as our older generations. At the end of the day, your doctor is going to write you a prescription thinking the drug will work for you, disregarding the potential drug not being tested on a person of color.
When drugs are first placed on the market, there are so many unknowns of how the drug will affect a black person. We need to be as prepared as possible.