Non-reporting and inconsistent reporting of race and ethnicity in articles that claim associations among genotype, outcome, and race or ethnicity

Abstract

Background: The use of race as a category in medical research is the focus of an intense debate, complicated by the inconsistency of presumed independent variables, race and ethnicity, on which analysis depends. Interpretation is made difficult by inconsistent methods for determining the race or ethnicity of a participant. The failure to specify how race or ethnicity was determined is common in the published literature. Hypothesis: Criteria by which they assign a research participant to racial or ethnic categories are not reported by published articles. Methods: Methods were reviewed for assigning race and ethnicity of research participants in 268 published reports reporting associations among race (or ethnicity), health outcome and genotype. Results: Of the 268 published reports reviewed, it was found that 192 (72%) did not explain their methods for assigning race or ethnicity as an independent variable. This was despite the fact that 180 (67%) of those reports reached conclusions about associations among genetics, health outcome and race or ethnicity. Conclusions: More attention needs to be given to the definition of race and ethnicity in genetic studies, especially in those diseases where health disparities are known to exist.

Demographic data in asthma clinical trials: A systematic review with implications for generalizing trial findings and tackling health disparities

“…Our finding that none of the asthma clinical trials explained how they assigned race/ethnicity classes to their patients (e.g., whether self-reported or researcher-assigned) is broadly consistent with results of a study by Shanawani, Dame, Schwartz, and Cook-Deegan (2006) which showed that the majority of medical research articles claiming associations among genotype, outcome and race/ethnicity did not explain their methods for assigning race or ethnicity.…”

Reporting of Underrepresented Populations in Autism Treatment Studies Across 25 Years

“…Despite widespread knowledge of the confounding factors of language background, SES, and racial/ ethnic background [8,16,26,44], however, many language focused studies still do not consider SES in their research design or they exclude participants whose primary language is not English. The deficiencies in UP representation in treatment studies have important implications for clinicians who serve a population increasing in both ASD diagnoses and diversity, and in the pursuit of evidence-based practice for all, recommendations have been made to recruit more inclusive samples.…”

“…Because it is largely unknown whether specific UP types moderate ASD treatment [8,44] or particular UP characteristics are correlated with other factors, such as treatment setting or target, an analysis beyond simple frequency of UP inclusion is essential.…”

Personalizing Medicine: Beyond Race

“…Most studies do not report how race information is obtained [28], e.g., self-identified or clinician determined, let alone standardize the process. The definition of race is also time-and geography-dependent [16].…”

“…Some believe race should not be used in medicine and research [23]. They believe avoiding classifying people by race will help promote recognition of the heterogeneity within groups [28] and continuing its use will derail true genetic research [19]. Focusing on racial health disparities also directs resources away from the true social, environmental, and other drivers of unequal disease distribution [29].…”