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Research Ethics and Intellectual Disability: Broadening the Debates

This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disab...

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Detalles Bibliográficos
Autor principal: Carlson, Licia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: YJBM 2013
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767215/
https://www.ncbi.nlm.nih.gov/pubmed/24058305
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author Carlson, Licia
author_facet Carlson, Licia
author_sort Carlson, Licia
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description This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights Movement and critical disability scholarship. These tensions are defined as the double dangers of inclusion and exclusion; the challenges of defining competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these tensions are not resolved, they underscore the importance of researchers engaging with critical disability perspectives in order to navigate these complex ethical questions.
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spelling pubmed-37672152013-09-20 Research Ethics and Intellectual Disability: Broadening the Debates Carlson, Licia Yale J Biol Med Focus: Research and Clinical Ethics This article examines the ethical issues surrounding the inclusion of people with intellectual disabilities as research subjects. It explores subject selection, competence, risk and benefits, and authority through three tensions that emerge when considering these concepts in the context of the Disability Rights Movement and critical disability scholarship. These tensions are defined as the double dangers of inclusion and exclusion; the challenges of defining competence and risk in terms of individuals vs. groups; and the conflicts that arise when pursuing the dual goals of amelioration and elimination of disabilities. Though these tensions are not resolved, they underscore the importance of researchers engaging with critical disability perspectives in order to navigate these complex ethical questions. YJBM 2013-09-20 /pmc/articles/PMC3767215/ /pubmed/24058305 Text en Copyright ©2013, Yale Journal of Biology and Medicine https://creativecommons.org/licenses/by-nc/3.0/This is an open access article distributed under the terms of the Creative Commons CC BY-NC license, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited. You may not use the material for commercial purposes.
spellingShingle Focus: Research and Clinical Ethics
Carlson, Licia
Research Ethics and Intellectual Disability: Broadening the Debates
title Research Ethics and Intellectual Disability: Broadening the Debates
title_full Research Ethics and Intellectual Disability: Broadening the Debates
title_fullStr Research Ethics and Intellectual Disability: Broadening the Debates
title_full_unstemmed Research Ethics and Intellectual Disability: Broadening the Debates
title_short Research Ethics and Intellectual Disability: Broadening the Debates
title_sort research ethics and intellectual disability: broadening the debates
topic Focus: Research and Clinical Ethics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767215/
https://www.ncbi.nlm.nih.gov/pubmed/24058305
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