How researchers can support health equity through improved use of racial and ethnic descriptors06 Apr, 20237 Minutes
Healthcare equity is a critical issue in the life sciences space, and recent discussions hav...
Healthcare equity is a critical issue in the life sciences space, and recent discussions have highlighted the need for researchers to be more cautious and appropriate in their use of racial and ethnic descriptors in healthcare research.
The use of these categorisations in healthcare research has been a topic of debate among researchers, clinicians, and policymakers. While these descriptors have played a significant role in identifying health disparities and informing clinical practices, they can also perpetuate misconceptions and contribute to healthcare disparities.
Historical use of race and ethnicity in healthcare research
The use of race and ethnicity in healthcare research has a long and complex history. Historically, these descriptors have been used to classify populations for research purposes, but they have often been applied inconsistently and inappropriately, leading to confusion and potentially harmful consequences.
Some researchers note that race has been used as a proxy for genetic differences among populations, even though the concept of race is not scientifically well-defined, and there is a growing consensus that it is a social construct rather than a biological category. Similarly, ethnicity has been used to describe groups with shared cultural, linguistic, or national characteristics, but this term can also be imprecise and is often confounded with race.
Misuse and confusion of terms and the potential implications
The misuse and confusion of racial and ethnic descriptors in healthcare research can lead to several problems. It can perpetuate stereotypes and stigmatise certain groups, reinforcing social and health disparities. Widespread use of race as a proxy for genetic risk has contributed to the perception that certain racial and ethnic groups are inherently more susceptible to certain diseases, even when genetic evidence suggests that these disparities are often driven by social, environmental, and behavioral factors.
The imprecise use of race and ethnicity can also lead to incorrect assumptions about genetic differences among populations, and potentially hinder the development of data-reliant technologies such as personalised medicine. For instance, some studies have found that genetic variants associated with drug response are not evenly distributed across racial and ethnic groups, leading to differences in treatment effectiveness and side effects. However, these findings may be influenced by the way race and ethnicity are measured and reported in research, and they may not accurately capture the true genetic diversity within and between populations.
Underrepresentation of certain groups in clinical trials can also be observed as a result of misuse of racial and ethnic descriptors in healthcare research. This underrepresentation limits the generalisability of research findings, and in more extreme cases, exacerbates health disparities. This can be observed in a study published in JAMA, that found that only 2% of participants in cancer clinical trials were Black, even though Black individuals make up 13% of the U.S. population and have a higher incidence of some types of cancer.
A call for change: rethinking racial and ethnic descriptors in healthcare research
In response to these concerns, a recent report from the National Academies of Sciences, Engineering, and Medicine called for researchers to rethink and justify how and why they use racial, ethnic, and ancestry labels in genetics and genomics research. The report recommends several steps to improve the use of these descriptors in research, including:
- Clearly defining and justifying the use of racial, ethnic, and ancestry labels in all research. It states that researchers should be transparent about their choice of labels, describe the methods used to assign them, and provide a rationale for their inclusion in the study.
- Recognising and addressing the limitations of race and ethnicity as proxies for genetic ancestry. It asks that researchers avoid using race and ethnicity as proxies for genetic ancestry unless there is a clear scientific justification for doing so, and they should consider using more precise measures of genetic variation, such as ancestry-informative markers, when appropriate.
- Ensuring that study populations are diverse and representative of the target population. The report emphasises the importance of including participants from different racial, ethnic, and socioeconomic backgrounds in their studies, and asks researchers to report the demographic characteristics of their samples in a clear and consistent manner.
- Engaging with communities and stakeholders to promote trust and collaboration. Researchers should involve community members, patients, and other stakeholders in the design, conduct, and dissemination of their research, in order to ensure that it is relevant, respectful, and responsive to the needs and concerns of diverse populations.
- Promoting transparency and open science. It asks researchers to share their data, methods, and findings in an accessible and transparent manner, in order to facilitate the replication, validation, and extension of their research by others.
By taking on board these recommendations, researchers in the life sciences field can help to ensure that their use of racial and ethnic descriptors is more cautious, appropriate, and equitable. This, in turn, can support the development of more personalised, effective, and inclusive healthcare, and contribute to the reduction of health disparities among different racial and ethnic groups.
The historical use of race and ethnicity in healthcare research has contributed to confusion, misuse, and potentially harmful consequences for health equity. In order to address these issues and promote more equitable healthcare research, it is crucial for researchers in the life sciences to rethink and justify their use of racial and ethnic descriptors, and to adopt best practices for the collection, analysis, and reporting of demographic data.
By following the recommendations put forth by the National Academies and other experts in the field, researchers can help to ensure that their work is more transparent, inclusive, and representative of the diverse populations they serve. Ultimately, this can lead to a more equitable healthcare system, in which all individuals have access to the care and treatment they need, regardless of their race, ethnicity, or background.