All They Needed to Do Was Ask: African-Americans in MS Research
Last updated: September 2023
There is a gap in knowledge between what we know about multiple sclerosis (MS) and how it affects African-Americans. It has been traditionally difficult to involve enough African-Americans in clinical trials to be statistically relevant. Although there may be some representation, there isn't enough to get good information. It is a difficult challenge to get a larger number of African-American participants due to a history of governmental research exploitation and current structural barriers. It is of the utmost importance to solve this problem. The number of African-Americans with MS is greater than initially thought and continues to grow.
So, how did I come to participate in two clinical trials and one observational research survey? How were the clinicians able to recruit me against a challenging backdrop?
All they needed to do was ask.
African-Americans and research exploitation
African-Americans were rightly skeptical of participating in medical research. There was a negative history of medical exploitation. Before Henrietta Lacks were the legendary Tuskegee Institute experiments.
Who was Henrietta Lacks?
Henrietta Lacks was an African-American woman whose cervical cells were collected in the 1950s without her permission. In the following decades, those cells were given away or sold without an acknowledgment of the woman who provided them. The cells named HeLa “... contributed to many medical breakthroughs, from research on the effects of zero gravity in outer space and the development of the polio vaccine, to the study of leukemia, the AIDS virus and cancer worldwide”.1
What was Tuskegee?
The Tuskegee Institute case dealt with African-American men left untreated, or encouraged to not seek treatment, for syphilis by the researchers. These men suffered the painful and debilitating results for over 30 years in order to find a cure.2 Even the advancements in gynecology are attributed to a controversial physician who performed many surgeries and experiments on enslaved women without anesthesia.3
African-Americans research attitudes: a new look
Yet, despite this history of exploitation, African-Americans want to participate in clinical research. The Multiple Sclerosis Minority Research Engagement Partnership Network, a two-year PCORI-funded study, found that cynicism and fear are not the biggest obstacles to African American participation in clinical research.4 The biggest obstacles tended to be access-oriented and due to factors outside of fear. As a matter of fact, assistance with issues such as transportation, childcare, or extended clinic hours are all greater basic barriers than fears of experimentation.
African-Americans with MS are eager to participate in research
African-American multiple sclerosis patients are as eager to participate in research as their counterparts of western European descent. The desire to give back to the MS community and learn more about the disease were strong motivating factors for all groups participating in the study.
How did I get involved in MS research?
So, why do so few African-American participate in MS research? What did the researchers and clinicians do differently to get me to give spinal fluid twice, donate a couple of dozen vials of blood, and share my personal feelings about having MS? There is unlimited power in the act of asking. Asking means making a connection with someone and humbling oneself.
All they needed to do was ask.
When African-Americans are educated about and asked to participate in research, we are just as likely to agree as any other racial groups. What this means is that we can get more information about how MS affects African-Americans. It means clinicians and researchers can get more African-American patients into clinical studies and other research opportunities. One of the first steps is to get clinical trial and other research study information into the hands of clinicians.
Healthcare professionals need information to start the conversation
Healthcare professionals cannot recruit if the information is not there for them to share. Empowering them with the knowledge about available research opportunities allows medical professionals to start the research conversation. Starting that conversation means that other African-American MS patients have the same chance to participate in research that I have had.
All they needed to do is ask and give all African-American M.S. patients a chance to say “Yes”.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: