Tracing the use and source of racial terminology in representations of genetic research

Abstract

Purpose:We examined the terminology used to describe populations in genetic research to understand how and when terminology is being used, changed, and framed. Methods: We compiled 36 complete article sets, which included newspaper articles and corresponding press releases and journal articles. Population terminology was traced from peer-review article, to press release, to newspaper article to determine changes in language and frequency. A qualitative analysis was then conducted on a smaller sample of the article sets to shed further light on the use and source of population terminology in this context. Results: Results indicated a wide variation in the frequency and terminology of population descriptor language used by genetic researchers and the media. The qualitative textual analysis highlighted differences in the use and the framing of population terminology between scientific literature and media representations. Conclusions: This study demonstrates how difficult it can be to control terminology use, even within the reporting of a specific study. Further work needs to be done in this area with a focus on accuracy in defining research terms and research populations in both the scientific literature and the media representations of genetic research. Genet Med 2011:13(4):314 -319.

Playing with fire? The impact of the hidden curriculum in school genetics on essentialist conceptions of race

“…Messages about the genetic basis of race are frequently found in popular culture (Beckwith, ; Condit & Bates, ; Nelkin & Lindee, ; Rachul, Ouellette, & Caulfield, ) and elementary school children have been observed thinking about race as a natural kind (Hirschfeld, ; Kinzler & Dautel, ; Pauker et al, ). Therefore, students in this sample probably possessed either tacit or explicit beliefs about essentialism prior to treatment.…”

Human genetic research, race, ethnicity and the labeling of populations: recommendations based on an interdisciplinary workshop in Japan

“…The popular press is often blamed for the use of inappropriate or imprecise terms in the context of population genetic studies, whereas many scientists may believe that they take adequate precautions when describing the study samples, defining populations, and presenting discussions based on their research results. However, evidence indicates that imprecise and less than ideal descriptors are introduced throughout the research communication process [26]. If these descriptors are not carefully chosen, they create the potential for confusion both within the scientific community and in the wider society, leading to research inefficiencies and various social, ethical, and clinical problems [7].…”

“…In this age of genomics, differences between populations are often reported as having genetic bases [26]. However, misunderstanding and extended interpretation of the results might contribute to discrimination, or justify health care and socio-economic inequalities [30].…”

Factors Associated With Participation in Rheumatic Disease–Related Research Among Underrepresented Populations: A Qualitative Systematic Review

“…It is important to note that the concepts of race and ethnicity are societal constructs grounded in attempts to categorize people based on physical, cultural, ancestral, and geographical differences (11). These terms fail to account for the significant genetic heterogeneity that exists within populations labeled as belonging to the same race, and little standardization of population‐level terminology exists within peer‐reviewed literature, especially for patients self‐identifying with more than 1 race (12,13). For the purposes of this review, we will use the term “African American” but recognize that the term is too restrictive to encompass all individuals of African ancestry (11).…”