Research Involving Participants with Cognitive Disability and Differences

Ethics, Autonomy, Inclusion, and Innovation
Erscheinungsjahr 2019
ISBN: 978-0-19-882434-3
Verlag: Sydney University Press

Buch, Englisch, 304 Seiten, Format (B × H): 173 mm x 249 mm, Gewicht: 726 g

Research participants who have cognitive disability and difference may be considered a vulnerable population. 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 that concern them. Participating in such research follows the Disability Rights Movement's call - "nothing about us without us."

This volume provides timely, multidisciplinary insights into the ethical aspects of research that includes participants with cognitive disability and difference. These include conditions such as intellectual disability, autism, mild cognitive impairment (MCI), and psychiatric diagnoses. The chapters in this volume describe situations where difficulties arise, And explore strategies for empowerment and inclusion. They draw 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.

This interdisciplinary volume includes contributions from scholars in anthropology, sociology, ethics, child studies, health and rehabilitation sciences, philosophy, and law who address these issues in both clinical and social/behavioral research. It will be valuable for anyone conducting research involving these populations in the clinical, humanistic, or social sciences.

Autoren/Hrsg.

Cascio, M Ariel

Racine, Eric

Fachgebiete

• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Klinische und Innere Medizin Neurologie, Klinische Neurowissenschaft
• Naturwissenschaften Biowissenschaften Biowissenschaften Neurobiologie, Verhaltensbiologie
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizinische Fachgebiete Psychiatrie, Sozialpsychiatrie, Suchttherapie
• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Medizin, Gesundheitswesen Medizinische Ethik
• Sozialwissenschaften Psychologie Allgemeine Psychologie Differentielle Psychologie, Persönlichkeitspsychologie Psychologische Diagnostik, Testpsychologie

Über Autor(innen)

M. Ariel Cascio, PhD, is a postdoctoral researcher at the Pragmatic Health Ethics Research Unit of the Institut de recherches cliniques de Montréal with a Ph.D. in Anthropology from Case Western Reserve University. Cascio's research focuses on social and ethical issues related to autism, including developing guidelines for person-oriented autism research ethics through a collaborative project with autistic self-advocates, parents, researchers, professionals, and
advocacy organization representatives.

Eric Racine, PhD, is Director of the Pragmatic Health Ethics Research Unit and Full Research Professor at the Institut de recherches cliniques de Montréal (IRCM), Canada with joint appointments at the Université de Montréal and McGill University. Inspired by philosophical pragmatism, his research aims to understand and bring to the forefront the experience of ethically problematic situations encountered by patients and stakeholders in order to resolve them collaboratively through
deliberative and evidenced-informed processes. He has published over 150 peer reviewed publications in leading journals in the social sciences (e.g., Social Science & Medicine; Public Understanding of Science), bioethics (e.g., Bioethics, American Journal of Bioethics), neuroscience (e.g., Pain, Neuron, Nature
Reviews Neuroscience), and clinical medicine and neurology (e.g., Neurology, Lancet Neurology).