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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research

Type
Conference

ELSIcon2022 • Paper • May 27, 2022

Madelyn Mauro, Anna Lewis

The appropriate use of population descriptors in genetics and beyond has been an often visited topic. Here we present the results of a systematic review of published recommendations. Following PRISMA guidelines, we extracted normative recommendations from N=99 articles matching inclusion criteria. Articles have been published consistently throughout the time period examined (2000-21), demonstrating perceived ongoing need for normative recommendations. Illustrating the interdisciplinary nature of the topic, articles appeared in journals spanning ethics, law, medicine, science, and public health. Most if not all authors for 86% of these articles were affiliated with institutions based in the USA. Thematic analysis revealed 10 themes. Nine of these represented broad alignment across articles: The need for transparency; Awareness of impact on particular communities; Use of appropriate statistical methodologies; The role of public reactions and public engagement; The need for diverse samples and practitioners; The need for an appreciation of nuance; The need for further research and guidelines. The tenth category, Appropriate definition and use of population categories, revealed substantial disagreement between articles. While many articles focus on the inappropriate use of race, none fundamentally problematize the use of ancestry This work can provide a resource to researchers looking for normative guidance on the use of population descriptors. And it can orientate authors of future guidelines, thus contributing to pushing the field towards clearer and effective future sets of guidelines.

Tags

Keywords
Language and categorization
Ethnicity
Use of race and ancestry in research and the clinic
Paper
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