Ethics, equity and research
Individuals from minoritized groups suffer high disease burdens and would significantly benefit from equitable advances in scientific research. However, many are faced with barriers that limit their access to scientific research. Despite advances in diversity, equity and inclusion, participants from racial/ethnic underrepresented groups account for only 10% of participants in clinical research.
There are known benefits to participating in scientific research, including treatment that may not be otherwise available, care from a specialized research team, opportunities to learn about an illness or satisfaction of contributing to medical knowledge. This is why researchers have an ethical obligation to focus on promoting equity in research participation.
Historically, it has been assumed that low participation of underrepresented groups was due to mistrust of clinical researchers, disinterest in research participation and fear of exploitation. While these are valid concerns, researchers often impose strict inclusion and exclusion criteria that prevents certain groups from participating.
Researchers must consider the benefits of recruiting a diverse participant sample and examine how certain inclusion criteria or factors might exclude certain individuals. For example, researchers may consider minimizing participant barriers by adding telehealth components to their study or reimbursing participants for travel to research appointments.
Additionally, there are other ways to help diversify research participation:
- Proactive outreach to underrepresented communities.
- Recruit staff to ensure that the diversity of research teams mirrors the general population.
- Strive to reach a similar racial/ethnic breakdown in research samples to match that of the general population.
Measuring outcomes in research studies is a critical step in promoting health equity. Often, research findings and implications are based on surveys and questionnaires used in a study. Psychometric properties (i.e., validity, reliability) of the measures are important to consider for the specific population of interest. Because survey construction consists of predominately white samples, participants from other racial/ethnic groups may interpret survey items differently. Cultural and individual factors can contribute to differences in survey item interpretation.
Without strongly considering these factors, researchers can make faulty conclusions when surveys are generalized across groups and not within groups. Rather than examining differences between racial/ethnic groups, focusing analyses on differences in structural and social determinants of health between and within racial/ethnic groups may begin to explain health inequities.
Conducting research is challenging, yet necessary to advance health and safety of all participants. Health disparities in research participation are widely documented and the sociopolitical climate supports efforts to address structural racism. However, research that includes diverse, representative samples using structurally informed methods remains low. With the bulk of the past and current research conducted with predominately white samples, future research should aim to oversample or solely recruit individuals from racial/ethnic minoritized groups. With the current knowledge of and growing focus on health equity, researchers and institutions should question if their own research meets ethical standards of equity.
By Dr. Darius B. Dawson, instructor, Department of Medicine – Health Services Research, Baylor College of Medicine
