Race and ethnicity in genetic research

Abstract

Use of race and ethnicity terms in genetic research continues to generate controversy. Despite differing opinions about their basis or relevance, there is some agreement that investigators using these terms should: explain why the terms or categories were used, define them carefully, and apply them consistently. An important question is whether these recommendations are reflected in practice. Here we addressed this question based on 330 randomly selected articles published between 2001 and 2004 that reported on genetic research and used one or more words from a defined list of race, ethnicity, or population terms. The recommendation that authors using race or ethnicity terms explain the basis for assigning them to study populations was met infrequently (9.1%), and articles that used race and ethnicity as variables were no more likely than those that used them only to label a sample to provide these details. No article defined or discussed the concepts of race or ethnicity. With limited exceptions, current practice does not reflect repeated recommendations for using race or ethnicity terms in genetic research. This study provides a baseline against which to measure future trends.

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

“…Other media sources, such as television, magazines, and the internet, are obviously important sources of information about genetic research. Despite such limitations, the data provide a picture that is both consistent with previous work regarding the lack of consistency 17,[25][26][27] and provides some insight into the source and nature of that inconsistency. In addition, it raises some interesting questions that are worth further consideration.…”

Social determinants of family health history collection

“…For this reason, ensuring equitable access to and promotion of all types of tools for retrieving genetic information among racial minorities is a high priority. Prior studies have compared racial groups in genetic test result acceptance, evaluated how race/ethnicity is used in genomic research, and examined the implications of genetics on conceptualizations of race/ ethnicity (Sankar 2003;Sankar et al 2007;Shields and Crown 2012). At this point, the more critical issue is how to offer genomic tools and services to racial minorities so that access and benefits are maximized and exposure to potential risks and harms are minimized.…”

A critical review of racial/ethnic variables in osteoporosis and bone density research

“…Researchers routinely neglect the complexity of race/ethnicity and treat it as a discrete characteristic, much like any other easily measured variable such as age, sex, or weight. Quite typically in medical and epidemiological research, racial/ethnic categories are poorly defined, applied inconsistently, and are associated with unclear concepts that make them unsuited for use as variables in scientific studies [13,26,[30][31][32]. Researchers also routinely presume inherent biological differences between racial groups, while neglecting the role of socioeconomic, environmental, and class contributions to racial health disparities [18,33,34].…”

“…Many current studies indicate that members of any given racial/ethnic group should not be presumed to be genetically distinct. Recent genomic analyses have shown that there is more genetic diversity within racial groups than between them [7][8][9][10], and that the human genome does not show dramatic differences between racial groups, but instead, demonstrates gradual regional variation [11][12][13].…”