It is 2019, and minority populations still account for fewer than 10% of clinical trial participants.
Two decades ago, the “NIH Policy and Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research” amendment mandated that the NIH include minorities in research that is federally funded. However, in a world where researchers are making consistent progress toward novel therapies (such as CAR T-cell therapy and CRISPR technology), a portion of the population is being left out from receiving the treatments which could benefit them.
It is an age-old issue of distributive justice. Minority populations are still disadvantaged by victimization and healthcare inequities, which has caused them to develop a distrust toward the medical field. This contributes to their apprehension in participating in clinical trials. The lack of diversity in such investigations only leads to further inequities.
Why It’s a Problem
When there aren’t many members of minority populations willing to participate in clinical trials, it becomes easier to study diseases which primarily affect white patients. For instance, cystic fibrosis (CF) affects 1 out of every 2,500 white individuals. Since 1996, the FDA has approved nine different therapies to treat the disease. Sickle cell disease (SCD) on the other hand, affects 1 out of every 365 African-American individuals but there has only been one drug to date approved by the FDA for the condition since 1996.
Of the genomes that are accessible to researchers, 80% are from individuals of European descent. This inhibits the research that can be conducted.
Something needs to be done in order to ensure all individuals are receiving the research, care, and therapeutic options that they deserve, regardless of their race, ethnicity, or gender.
What Can be Done
It takes more effort to recruit diverse populations for clinical trials than it does to recruit white individuals. But just because it takes more effort does not mean it should not be done. There is a history of mistrust because, historically, the medical field has not done right by minority populations. To combat this, we need to focus more on the concept of distributive justice. This is the idea that medical care, rights, and wealth should be fairly shared within society.
While, “Science is not going to solve systemic inequity and injustice,” ensuring everyone has access to novel therapies is most certainly a step in the right direction.
This in and of itself is not an easy feat. We have to work to rebuild trust in order to increase recruitment. It starts with simple steps such as hiring diverse employees who will study things that are relevant to their experiences. It will take time and consistent effort, both of which are necessary to not only solve the problem, but to ensure it will not get worse.
You can read more about this take on minority representation in clinical trials here.