For a variety of reasons, racial and ethnic minorities in the US do not participate in clinical research in numbers proportionate to their representation in the population. Although legitimate mistrust by minorities of the healthcare system is one reason, institutional barriers and discrimination also contribute to the problem. The equitable inclusion of minorities in research is important, both so that they receive an equal share of the benefits of research and to ensure that they do not bear a disproportionate burden.
Under-representation is not just a question of fairness in the distribution of research risks. It also creates burdens for minorities because it leads to poorer healthcare. Since participation in clinical trials provides extra consultation, more frequent monitoring, and access to state-of-the-art care, study participation can represent a significant advantage over standard medicine. To the extent that participation in research may offer direct therapeutic value to study subjects, under-representation of minorities denies them, in a systematic way, the opportunity to benefit medically.
For many years, our system for drug development has operated under the assumption that that we can test materials in one kind of prototypical human body and then extrapolate the data about safety and efficacy to all people. That’s a mistake; the more we learn about how drugs metabolize differently based on genetics and environmental factors, the more important it becomes to account for sub-group safety and efficacy outcomes. More recently, greater emphasis has been placed on community-based participatory research. This movement toward sharing decision-making power between the observer and the observed is a critical step for addressing both the subject and researcher sides of the inequality equation.