NOT ENOUGH COLOR - RACIAL/ ETHNIC DISPARITY IN CLINICAL RESEARCH
The United States is comprised of about 40% of Americans that identify as a non-white. When it comes to clinical trials conducted to test new drugs in the United States, the patients involved are white 80-90% of the time. Despite this, the drugs in these trials are typically purchased and used by people of color.
The reason this presents a problem is because symptoms of certain conditions such as heart disease, cancer, or diabetes differ between ethnicities. Lack of diversity in research studies leads to lack of concrete evidence that treatments may work in certain populations. Additionally, lack of diversity in research studies leads to lack of knowledge of side effects that may arise in one population that did not arise in another population.
There are factors that play a role in the disparities seen in clinical research trials. One of those factors are system-level barriers, which are found at the hospital/health care system level of a trial. Included in these barriers are small number of both regional and national clinical trials available, a short supply of resources available for trial support, costs for both the hospital and patients/subjects, strict and restrictive trial study designs, and lastly not enough community engagement. These barriers typically have unequal effect on minority populations, who experience them more often.
In a 2014 a study was conducted, and it found that only 2% of over 10,000 cancer clinical trials financed by the National Cancer Institute were focused on a minority. In 2015 it was found that only 1.9% of all respiratory disease studies involved minority patients, and less than 5% of National Institute of Health financed respiratory research studies involved minority patients. African Americans are more likely to suffer from respiratory diseases more than white Americans.
Some causes for lack of diversity in clinical research are fear of discrimination by medical professionals, lack of access to specialty care centers that recruit patients, fear of exploitation, lack of time to participate, lack of monetary resources to participate. Lack of diversity in clinical trials is reflected internationally as well. In a study of trials conducted in 2018, 150,000 patients in 29 different countries at 5 different points in time over the past 21 years displayed the ethnic makeup of the trials to be 86% percent white.
Sources:
Editors, T. (2018, September 01). Clinical Trials Have Far Too Little Racial and Ethnic Diversity. Retrieved April 20, 2020, from https://www.scientificamerican.com/article/clinical-trials-have-far-too-little-racial-and-ethnic-diversity/
CICCRP. (n.d.). During Participation. Retrieved April 20, 2020, from http://0393122.netsolhost.com/education-center/charts-and-statistics/during-participation/
Guerrero, S., López-Cortés, A., Indacochea, A., García-Cárdenas, J., Zambrano, A., Cabrera-Andrade, A., . . . Paz-y-Miño, C. (2018, September 18). Analysis of Racial/Ethnic Representation in Select Basic and Applied Cancer Research Studies. Retrieved April 26, 2020, from https://www.nature.com/articles/s41598-018-32264-x
Hamel, L., Penner, L., Albrecht, T., Heath, E., Gwede, C., & Eggly, S. (2016, October). Barriers to Clinical Trial Enrollment in Racial and Ethnic Minority Patients With Cancer. Retrieved April 28, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5131730/
"Clinical Trials Need More Diversity" in Scientific American 319, 3, 10 (September 2018)
doi:10.1038/scientificamerican0918-10