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A proposal for an inclusive working definition of genetic discrimination to promote a more coherent debate.
Kaiser, Beatrice; Uberoi, Diya; Raven-Adams, Maili C; Cheung, Katherine; Bruns, Andreas; Chandrasekharan, Subhashini; Otlowski, Margaret; Prince, Anya E R; Tiller, Jane; Ahmed, Arzoo; Bombard, Yvonne; Dupras, Charles; Moreno, Palmira Granados; Ryan, Rosalyn; Valderrama-Aguirre, Augusto; Joly, Yann.
Affiliation
  • Kaiser B; Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
  • Uberoi D; Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
  • Raven-Adams MC; Global Alliance for Genomics & Health, London, UK.
  • Cheung K; Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
  • Bruns A; The German Human Genome-Phenome Archive, University Hospital, Heidelberg, Germany.
  • Chandrasekharan S; National Institutes of Health, Bethesda, MD, USA.
  • Otlowski M; Centre for Health, Law and Emerging Technologies, University of Oxford, Oxford, UK.
  • Prince AER; The University of Iowa College of Law, Iowa City, IA, USA.
  • Tiller J; Monash University, Parkville, Victoria, Australia.
  • Ahmed A; Genomics England, London, UK.
  • Bombard Y; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada.
  • Dupras C; Genomics Health Services Research Program, St. Michael's Hospital, Unity Health Toronto, Toronto, Canada.
  • Moreno PG; University of Montreal, Montreal, Quebec, Canada.
  • Ryan R; Centre of Genomics and Policy, McGill University, Montreal, Quebec, Canada.
  • Valderrama-Aguirre A; Healthfox US Inc., Chicago, IL, USA.
  • Joly Y; Department of Biological Sciences, Universidad de Los Andes, Bogotá DC, Colombia.
Nat Genet ; 56(7): 1339-1345, 2024 Jul.
Article in En | MEDLINE | ID: mdl-38914718
ABSTRACT
Genetic discrimination is an evolving phenomenon that impacts fundamental human rights such as dignity, justice and equity. Although, in the past, various definitions to better conceptualize genetic discrimination have been proposed, these have been unable to capture several key facets of the phenomenon. In this Perspective, we explore definitions of genetic discrimination across disciplines, consider criticisms of such definitions and show how other forms of discrimination and stigmatization can compound genetic discrimination in a way that affects individuals, groups and systems. We propose a nuanced and inclusive definition of genetic discrimination, which reflects its multifaceted impact that should remain relevant in the face of an evolving social context and advancing science. We argue that our definition should be adopted as a guiding academic framework to facilitate scientific and policy discussions about genetic discrimination and support the development of laws and industry policies seeking to address the phenomenon.
Subject(s)

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Human Rights Limits: Humans Language: En Journal: Nat Genet Journal subject: GENETICA MEDICA Year: 2024 Document type: Article Affiliation country: Country of publication:

Full text: 1 Collection: 01-internacional Database: MEDLINE Main subject: Human Rights Limits: Humans Language: En Journal: Nat Genet Journal subject: GENETICA MEDICA Year: 2024 Document type: Article Affiliation country: Country of publication: