Author: Joseph Asper, Marian University College of Osteopathic Medicine
In our current times, insofar as we choose to accept it, we are blessed by the great array of diversity that opens our eyes to new dimensions. In the medical research lens, this diversity has brought impactful insights that helped shape different guidelines based on the patient’s ethnicity. From accepting new cultural behaviors to discovering your new favorite dish from halfway across the globe, there is much to say about the beauty of cultural diversity and how it impacts our daily lives. However, many people, on all sides of the political tightrope, ask the question: “What is the benefit of being inclusive to different cultures in medical research?” with either an inquisitive or defensive mindset. For good or for worse, this question is a very important question and the very reason I would like to share some research and perspective in order not to convert minds but to hopefully show an angle of life that could get you the reader more curious. Therefore, I invite you all to sit down and listen, then go and think, and finally ask and share the beauty of what you learned for others to also ask and learn.
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A 2022 publication titled “Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups” highlights some of the many concerns and reasons why diversity is not only acceptable but critically needed in medical research1. A common ground concept to appreciate this need would be the statistical question of “How generalizable is this research to the public?” Take Alzheimer’s disease, a current hot trend in medical research due to the millions of individuals affected by Alzheimer’s and other related dementias. At the current moment, there is no complete cure, and most medications are for the reduction of symptoms or delay in the progression of the disease. A complete reversal, such as Amoxicillin’s effect on otitis media, does not currently exist, prompting a rapid race to find the cure. When researching potential hazards and behaviors that can increase the risk of Alzheimer’s, we do see some common ground: inactivity, family history, and smoking to name a few. However, if we take one step back and break down the demographics, we see that the NIH in 2021 has identified that Black Americans are 1.5-2x more likely than White Americans to get Alzheimer’s disease and other related dementias 2. But why is that one might ask? The answer is not as simple as the question asked, and due to the multifactorial nature of Alzheimer’s disease, it is easy to confuse cause/effect and blame various triggers when a much greater question must be asked. Let’s dive into this question.
We might come to the conclusion that if Black Americans are about twice as likely than White Americans to get Alzheimer’s disease, there would be a greater participation in research with the Black community to best serve their generations. However, quite the opposite is true, where Washington University School of Medicine in St Louis highlights in their Winter 22-23 magazine: “African Americans make up about 20% of U.S. Alzheimer’s patients, but only about 2% of Alzheimer’s clinical trial participants.” Again, we might scratch our heads asking but why? Again, the multifactorial nature of this situation comes back into place, creating this cycle of a self-perpetuating sociological phenomenon I would coin as Asper’s Circle. In this circle, there is a growing issue that affects a certain population, and despite how one might think there would be a greater rush to solve the issue, the opposite happens, causing even more people to suffer and for the issue to be prolonged longer than it should be. However, this circle needs to be stopped rapidly, and the solution might not be simple, but possible if we all work together with compassion.
The first and foremost step in eliminating this noxious cycle is by opening a loving and communicating ear with each other. Another tenant of Asper’s Circle is the need for an additional community to assist with breaking the circle or else the circle continues to withstand or get worse. Therefore, one good way to help increase diversity in Alzheimer’s disease research is by having Non-Black communities extend communication and build trust with the Black communities in hopes of better educating and listening to the needs of such communities. Through education and communication, we can understand the concerns and address any fears or issues that cause such gaps in research participation. Likewise, while my example here is Black communities with Alzheimer’s disease, this is not limited to that specific demographic but should extend to all minority communities. Over 12% of older Adults in the Hispanic/Latino community are diagnosed with Alzheimer’s disease, placing them as one of the highest-risk category minority groups 3. Alzheimer’s Association reports that 1 in 3 Native American Elders will develop Alzheimer’s disease 4. The need to help other communities goes on but that is not to say that any group is weak, per our attention and support should be extended to those in need just like how a brother or sister would reach out and save a sibling that fell from the scooter. By gaining the trust of minority communities, through social communication and listening, we might perhaps see an increase in research participation from different minorities. This all comes back to the golden rule, treat others how you want to be treated. As such, due to historic mistreatment and misunderstandings, there has been a rift between minority communities and thankfully with greater awareness will come greater change and a peaceful loving solution.
A big reason why there is a high rate of minority individuals who develop Alzheimer’s disease can be attributed to the stressful environmental factors that perpetuate neurological pathologies. Poor work environments, poor social support, poor food nutrition consumption, and so on. While Alzheimer’s disease research tries to bring into the aspect of generalizability, there will always be nuances specific to minority communities that contribute to greater risk. One example is the ABCA7 gene. “ABCA7 has been shown to have a stronger effect size than the apolipoprotein E (APOE) ɛ4 allele in African American/Black adults” according to the 2022 research publication ABCA7, a Genetic Risk Factor Associated with Alzheimer’s Disease Risk in African Americans 5. Specific cultural and racial factors can disproportionately increase the risk of diseases in certain minority communities, and therefore, there should be an increased demand for research within said communities in order to better understand the nuances and resolve the problem with a cure.
Therefore, it is important to understand why diversity is not a political issue in the research sense, but rather one of critical need, to help you and I, and everyone else around us. While I bring in Alzheimer’s disease, my discussion here is not limited to that one pathology. There are multitudes of conditions, from heart to lungs and eyes to ears, all affecting different ethnic and racial groups with different factors contributing to the progression and even digression of said pathologies. With that being said, the more research participation from different minority groups we have, the more we can understand these triggers and better help different communities. With low research participation, comes low data, and that does no one any good. Certainly, I, being a Mediterranean from parental ancestry, am thankful for the studies on different Greek and Iraqi groups, as it better helps me understand the niche medical nuances within both these communities that will affect me differently than someone from halfway across the globe. And while perhaps my background is not, for example, Vietnamese, that is not to say that I should neglect anyone who is Vietnamese and only focus on my blood. If we can eliminate the mindset of focusing on ourselves, and instead show compassion to others, there perhaps will be half the number of medical problems in this world. Therefore, diversity is not a mere buzzword, but a need, in research, for the cure of different conditions, and to understand many things we currently do not know about said conditions without a greater quantity of participants from different minority groups.
References:
1-National Academies of Sciences, Engineering, and Medicine; Policy and Global Affairs; Committee on Women in Science, Engineering, and Medicine; Committee on Improving the Representation of Women and Underrepresented Minorities in Clinical Trials and Research. Improving Representation in Clinical Trials and Research: Building Research Equity for Women and Underrepresented Groups. Bibbins-Domingo K, Helman A, editors. Washington (DC): National Academies Press (US); 2022 May 17. PMID: 36137057. https://pubmed.ncbi.nlm.nih.gov/36137057/
2- https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers-disease-diagnosis-between-black-and-white-research
3- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5874398/ Vega IE, Cabrera LY, Wygant CM, Velez-Ortiz D, Counts SE. Alzheimer’s Disease in the Latino Community: Intersection of Genetics and Social Determinants of Health. J Alzheimers Dis. 2017;58(4):979-992. doi: 10.3233/JAD-161261. PMID: 28527211; PMCID: PMC5874398.
4- https://www.alz.org/help-support/resources/native-americans#:~:text=As%20many%20as%201%20in,some%20other%20form%20of%20dementia.5- Stepler KE, Gillyard TR, Reed CB, Avery TM, Davis JS, Robinson RAS. ABCA7, a Genetic Risk Factor Associated with Alzheimer’s Disease Risk in African Americans. J Alzheimers Dis. 2022;86(1):5-19. doi: 10.3233/JAD-215306. PMID: 35034901. https://pubmed.ncbi.nlm.nih.gov/35034901/