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Research Involving Participants with Cognitive Disability and Difference – Ethics, Autonomy, Inclusion, and Innovation - Oxford Scholarship Online
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Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation

M. Ariel Cascio and Eric Racine

Abstract

Research Involving Participants with Cognitive Disability and Difference: Ethics, Autonomy, Inclusion, and Innovation provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and differences. These include conditions such as intellectual disability, autism, mild cognitive impairment, and psychiatric diagnoses. Research participants with cognitive disabilities and differences may be considered a vulnerable population, which may trigger protective responses. At the same time, they should also be empowered to participate ... More

Keywords: research ethics, autonomy, cognitive impairment, cognitive disability, methodology, disability studies

Bibliographic Information

Print publication date: 2019 Print ISBN-13: 9780198824343
Published to Oxford Scholarship Online: October 2019 DOI:10.1093/oso/9780198824343.001.0001

Authors

Affiliations are at time of print publication.

M. Ariel Cascio, editor
Postdoctoral Researcher, Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal, Neurology & Neurosurgery, McGill University, Canada

Eric Racine, editor
Full Research Professor, Department of Medicine and Department of Social and Preventive Medicine, Université de Montréal, Canada

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Contents

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Section 1 Conceptual Frameworks

4 Research Cohorts

Deborah R. Barnbaum

Section 2 Challenges

6 Disability, Vulnerability, and the Capacity to Consent

Stephanie Patterson and Pamela Block

8 Bridging Worlds

Leonardo Carbonieri Campoy

10 Mediators of Inclusion

Vanessa Cox, Treena Orchard, Pamela Cushing, and Elizabeth Anne Kinsella

11 Shifting Identities

Jack Trammell

Section 3 Successes

16 A Conversation with Research Ethics Boards About Inclusive Research with Persons with Intellectual and Developmental Disabilities

Virginie Cobigo, Lynne A. Potvin, Casey Fulford, Hajer Chalghoumi, Mariam Hanna, Natasha Plourde, and Whitney D. Taylor

17 Assuming Capacity

Anne Kohler

Section 4 Commentaries

26 Joining Voices

Anne Kohler and Benjamin Majewski

28 “Caught Between the Suffering and the Good”

Melissa Park and Donald Fogelberg

End Matter