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
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 in research in order to foster the growth of knowledge and the improvement of practices. For research participants with cognitive disabilities or differences, participating in research that concerns them follows the Disability Rights Movement’s call “Nothing About Us Without Us” and is a vital component of the principle of justice. However, cognitive disabilities and differences may pose challenges to ethical research, particularly with respect to the research ethics principle of autonomy for a variety of reasons. Several alternative or modified strategies, for example when obtaining informed consent, have been used by researchers. The chapters in this volume describe situations where difficulties arise, explore strategies for empowerment and inclusion, drawing on both empirical and normative research to offer suggestions for research design, research ethics, and best practices that empower people with cognitive disabilities and differences to participate in research while respecting and managing potential coercion or undue influence. Contributions from scholars in anthropology, sociology, ethics, child studies, health and rehabilitation sciences, philosophy, and law address these issues in both clinical and social/behavioral research.
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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