Time to Rethink Race-based Research?

A new report from the National Academies of Sciences, Engineering, and Medicine calls on biomedical researchers to evaluate the merits of including race to define cohorts on a case by case basis. It also advises transparency and justification for categorizing research participants by race or ethnicity.

Typically, biomedical studies in the US collect patient data in accordance with the US Office of Management and Budget (OMB) categories for race. This has led to a trend to stratify results by race, despite decades of research that disproves the biological basis of race. Observations of a higher incidence of sickle cell disease among Black patients, for example, have subsequently been attributed to geographic distribution or ancestry rather than race.

Arguing that race and ethnicity do not account for genetic variation or determine the likelihood and course of disease, the consensus report expresses concern that they are still used in biomedical research. It suggests that social factors such as racism and poverty, that may have a greater impact on health, have been neglected as a result.

Despite this, the report does acknowledge that race and ethnicity attributes can be useful in certain circumstances – such as ensuring a diverse or representative cohort of participants. If researchers do decide to capture race and ethnicity in their work, they are encouraged to define those terms in all reports and state the rationale for their inclusion. But what should guide those decisions?

The report suggests some considerations:

• Appropriateness – Researchers should consider the historical and social context of their research question, and consider the benefits, limitations, and/or harms of using race and ethnicity. They should refrain from making unsupported inferences, such as relying on race and ethnicity as causes of biomedical outcomes in individuals.
• Transparency – Researchers should assess and report the performance of biotechnologies across a range of racial and ethnic groups
• Rationale – All inclusions or exclusions of racial and ethnic categories should be based on scientific rationale, motivated by the research question.
• Definition – Researchers should explain their approach to using race and ethnicity, including any limitations. 
• Measures – Multiple measures of economic and social factors should be included, where possible. Researchers should not rely solely on data that asks people to self-identify their race based on race and ethnicity categories.

The National Academies hopes that the recommendations in this report will help to ensure responsible use of race and ethnicity in research and an end to the harm that their misuse can cause. If adopted, this new approach has the potential to reduce bias in research and health care, engendering greater trust among patient groups and communities.