Faces in Medicine: Addressing Representation in Clinical Research

Written by Saee Risbud

Image courtesy of Getty Images

Diverse representation – it's a widely discussed topic. From the movies, to other forms of media, to the workplace, to the government, to universities, to schools, to any and all professions, diversity is becoming consistently and constantly prioritized. But while promoting diversity in these avenues of life is brought to the forefront of debates and discussion, there are some realms where representation isn’t talked about enough: particularly, in clinical research. 

Clinical research is extremely important: it’s a leading contributor to the treatment of diseases, and it greatly improves quality of life for people around the nation. However, the lack of minority representation in clinical trials means that populations that aren’t included in clinical trials face real health consequences. For example, 5-Fluorouracil, a drug used to treat cancer, can exhibit more frequent toxic responses (such as anemia and leukopenia) in minority populations, but was tested with an overrepresentation of white/European Americans. As a result, many of the side effects that could have occurred in minority groups were missed. Lack of representation also makes it difficult for minority populations to access new therapeutics, as they are often restricted to the populations tested. Health disparities in minority populations are then compounded, and minority populations are systemically left behind by the healthcare system. Ultimately, the health inequities they face from lack of care and access to treatments resonate down generations. This recent report from the National Academies of Science, Engineering, and Medicine is a great resource for learning more. 

In 2020, the FDA found that white individuals make up 67% of the U.S. population, but make up 83% of the participants in clinical research, black individuals make up 13.4% of the U.S. population, but only 5% of the participants, and Hispanic/Latino individuals make up 18.1% of the U.S. population, but less than 1% of participants. This underrepresentation doesn’t just include racial/ethnic minorities -- it also includes older adults, individuals who lactate, women, LGBTQIA+ people, Native Americans, and people with disabilities. 

But this problem is not that easy to fix: increasing representation in clinical research comes with a host of challenges. In the first place, many underrepresented communities lack trust in the healthcare system, due to a long and deep history of medical abuse and exploitation. Physicians also carry their own biases: multiple studies have shown that physicians are less likely to prescribe important treatments to minority patients. For example, Black women are less likely to be referred for cardiac catheterization when they need it, and many physicians have preconceived negative perceptions of their Black patients (believing them to be less intelligent and less likely to comply), before they even begin treatment. Minorities are also more likely to trust minority physicians, but a lack of minority representation within physicians themselves deters minorities from confiding in their doctors. 

Other challenges include the economic barriers that many minorities face: many minority groups are low-income, which creates systemic barriers that prevent participation in clinical trials. Many low-income communities lack easily accessible public transportation and access to medical and health education. Minorities are less likely to have health insurance, more likely to live near hospitals with limited resources, and aren’t exposed to detailed and thorough medical care. 

What exactly can be done moving forward? First, there needs to be increased transparency and communication about the benefits of participating in clinical research. Minority populations need to have their concerns addressed, be informed of all novel trials and options, and be educated about the benefit of clinical trials to their populations through culturally relevant curriculums -- in other words, physicians and minority communities need to build trust with one another. In the second place, trials should offer compensation that soothes some of the difficulties experienced by low-income populations and groups that lack health insurance and/or accessible care (for example, providing longer site hours or in-home care). Additional resources such as virtual appointments and providing transportation are also great steps to take. 

Moreover, researchers starting clinical trials should have a clear and definite plan for incorporating demographically accurate representation for the disease that they’re studying. Groups that are most affected by the disease should make up a large portion of the trial and if no group is particularly affected, no group should be overrepresented. The FDA and other government agencies should get involved: boards can review the design of new trials, provide tax incentives, and extend sponsoring and funding to researchers who incorporate better representation. 

So although we have a long way to go to achieve more representation in clinical research, there’s plenty of ways to improve. Prioritizing diversity in clinical research will provide invaluable benefits to the overall health of the nation, as well as to families everywhere. It’s a worthwhile investment in ourselves and our future.