Historically, Black Americans have had a mistrust of doctors and the medical community. And consequently, we participate in clinical trials at much lower rates than other ethnic groups. So what does that mean for us?
For as long as we do this, we will remain the least healthy ethnic group in the United States. We will continue to be more likely to suffer from obesity, diabetes, hypertension, heart disease, asthma and HIV/AIDS. And we will continue to be less likely to survive prostate cancer, breast cancer, and lung cancer.
Most drugs and treatments for diseases are developed and designed for middle-aged white men. Though we are over-represented in diseases, Black Americans are significantly underrepresented in medical research. According to the Food and Drug Administration, while Black Americans represent just over 12 percent of the total U.S. population, they comprise just 5 percent of clinical trial participants. Despite a Congressional mandate that research financed by the National Institutes of Health include minorities, people of color comprise less than 5 percent of participants in NIH-supported studies.
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So what’s the problem? We know about the Tuskegee Syphilis experiment, where Black men were given misinformation and lied to by the U.S. Public Health Service in return for free medical care. And, you may have read The Immortal Life of Henrietta Lacks, where a young Black woman’s cells were cultivated for research without her knowledge and consent, and serve as the foundation for most of the world’s cancer research. Then there’s also the fear that you could get the placebo drug and actually sacrifice your treatment.
We understand that there are some valid reasons to be concerned about medical science, but allow us to add some perspective.
What are clinical trials?
First, let’s accurately define what clinical trials are. Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies may also show which medical approaches work best for certain illnesses or groups of people. Clinical trials, also known as “clinical research studies”, or “clinical studies”, are studies in human volunteers that try to answer specific health questions. Some clinical trials measure the safety and effectiveness of potential new treatments. Other clinical trials observe health issues and behaviors in large groups of people.
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Related: 5 Black Clinical Trials FAQs, Answered
Facts to consider
1. Because Black Americans don’t participate in clinical trials, the data is limited on how Black people respond to various treatments. When Black Americans participate in clinical trials, they help improve the health of all people and provide a greater understanding of health disparities.
2. New medicines being developed are sub-optimal for Black Americans because most of the clinical trials conducted in this country suffer from this pronounced lack of diversity, which can further exacerbate minority health disparities.
3. Clinical trials are not only for sick people. In many cases, healthy participants are needed so they can study lifestyles and understand behaviors that may ultimately lead to illness.
4. It is rare that clinical trial volunteers have been hurt by the treatment or procedure being tested. At the same time, hundreds of thousands of people have been helped and are alive because they or other people chose to participate in a trial that resulted in a new, more effective treatment.
5. Clinical trials are closely monitored for safe and ethical treatment of volunteers. Federal guidelines and codes of ethics are in place to protect clinical research volunteers from harm. In addition, an Institutional Review Board, a panel of professionals and community members, is responsible for monitoring study safety and protecting volunteer rights in every clinical trial.
So what can we do?
How clinical trials can make your family healthier
Do you have or is there someone in your family who has health problems? What would make you want to participate in a trial? If you knew you could help someone in your family, would you be motivated to participate? Would you be more likely to participate if you were approached by a doctor, a drug company, or someone you know?
Researchers can’t confirm what the results of a clinical trial will be before it starts. But we do know that when we include people of color in research and in clinical trials, we are much more likely to find out how these treatments perform in the real world.
We challenge you to think about what you would and could do so that our community can be healthier. It could not only help you recover from an illness, but it could also pave the way for others to be healthy. And, again, you don’t have to be sick to participate in a trial.
If you are interested in advancing science, you can access information about all trials at www.clinicaltrials.gov. ClinicalTrials.gov is a Web-based resource that provides patients, their family members, healthcare professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions. The website is maintained by the National Library of Medicine at the National Institutes of Health. You can also check out BDO’s Clinical Trials Resource Center for the latest Black Clinical Trial info.
Medical science will continue to advance around us. We should all do our part to build a healthier community.
For more information about clinical trials, visit our Clinical Trials Resource Center.
