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A scoping review of guidelines for the use of race, ethnicity, and ancestry reveals widespread consensus but also points of ongoing disagreement.
Mauro, Madelyn; Allen, Danielle S; Dauda, Bege; Molina, Santiago J; Neale, Benjamin M; Lewis, Anna C F.
Afiliação
  • Mauro M; Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA, USA.
  • Allen DS; Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA, USA.
  • Dauda B; Center for Global Genomics and Health Equity, University of Pennsylvania, Philadelphia, PA, USA; Institute of Clinical Bioethics, Saint Joseph's University, Philadelphia, PA, USA.
  • Molina SJ; Department of Sociology, Northwestern University, Evanston, IL, USA.
  • Neale BM; Broad Institute of Harvard and MIT, Cambridge, MA, USA; Analytic and Translational Genetics Unit, Massachusetts General Hospital, Boston, MA, USA; Center for Genomic Medicine, Massachusetts General Hospital, Boston, MA, USA.
  • Lewis ACF; Edmond J. Safra Center for Ethics, Harvard University, Cambridge, MA, USA; Division of Genetics, Department of Medicine, Brigham and Women's Hospital, Boston, MA, USA. Electronic address: annalewis@fas.harvard.edu.
Am J Hum Genet ; 109(12): 2110-2125, 2022 12 01.
Article em En | MEDLINE | ID: mdl-36400022
ABSTRACT
The use of population descriptors such as race, ethnicity, and ancestry in science, medicine, and public health has a long, complicated, and at times dark history, particularly for genetics, given the field's perceived importance for understanding between-group differences. The historical and potential harms that come with irresponsible use of these categories suggests a clear need for definitive guidance about when and how they can be used appropriately. However, while many prior authors have provided such guidance, no established consensus exists, and the extant literature has not been examined for implied consensus and sources of disagreement. Here, we present the results of a scoping review of published normative recommendations regarding the use of population categories, particularly in genetics research. Following PRISMA guidelines, we extracted recommendations from n = 121 articles matching inclusion criteria. Articles were published consistently throughout the time period examined and in a broad range of journals, demonstrating an ongoing and interdisciplinary perceived need for guidance. Examined recommendations fall under one of eight themes identified during analysis. Seven are characterized by broad agreement across articles; one, "appropriate definitions of population categories and contexts for use," revealed substantial fundamental disagreement among articles. Additionally, while many articles focus on the inappropriate use of race, none fundamentally problematize ancestry. This work can be a resource to researchers looking for normative guidance on the use of population descriptors and can orient authors of future guidelines to this complex field, thereby contributing to the development of more effective future guidelines for genetics research.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Etnicidade / Comportamento Problema Tipo de estudo: Guideline / Prognostic_studies / Systematic_reviews Limite: Humans Idioma: En Revista: Am J Hum Genet Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Estados Unidos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Etnicidade / Comportamento Problema Tipo de estudo: Guideline / Prognostic_studies / Systematic_reviews Limite: Humans Idioma: En Revista: Am J Hum Genet Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Estados Unidos