Overview

This volume 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 (MCI), and psychiatric diagnoses. 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.

Full Product Details

Author:   M. Ariel Cascio (Postdoctoral Researcher, Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montreal, Neurology & Neurosurgery, McGill University, Canada) ,  Eric Racine (Full Research Professor, Department of Medicine and Department of Social and Preventive Medicine, Universite de Montreal, Canada)
Publisher:   Oxford University Press
Imprint:   Oxford University Press
ISBN:  

9780198824343

ISBN 10:   0198824343
Pages:   304
Publication Date:   19 September 2019
Audience:   Professional and scholarly ,  Professional & Vocational
Format:   Hardback
Publisher's Status:   Forthcoming
Availability:   To order  

Table of Contents

Section I: Conceptual Frameworks 1: Lauren Sankary and Paul Ford: Ongoing consent in situations of cognitive vulnerability: Special considerations in implanted neural device trials 2: Megan Wright: Who Decides? Legal Changes to Facilitate Inclusion of Participants with Impaired Cognition in Research 3: Britteny Howell and Karrie Shogren: Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research 4: Deborah Barnbaum: Research Cohorts: Diverse Research Subjects, Similar Remedies to Errors in Consent 5: Kenneth A Richman: Autism, Autonomy, and Research Section II: Challenges 6: Stephanie Patterson and Pamela Block: Disability, Vulnerability, and the Capacity to Consent 7: Mackenzie Salt: REB/IRB Variability and Other Ethical Challenges in Multi-site Research Involving Participants on the Autism Spectrum 8: Leonardo Campoy: Bridging worlds: can anthropology be a communicational therapy? 9: Christine Schneider and Eva Kahana: Challenges of Participating in Research about Living with MCI among Disabled Veterans 10: Vanessa Cox, Treena Orchard, Pamela Cushing, and Elizabeth Anne Kinsella: Mediators of Inclusion: Challenges to Including Adults with Mild Intellectual Disability in Qualitative Research 11: Jack Trammell: Shifting Identities: Research on Macro and Micro Aspects of ID College Programs Section III: Successes 12: Marjorie Montreuil, Gail Teachman, and Franco Carnevale: Recognizing the voices of children with 'cognitive impairments' in research 13: Eran Klein: Informed consent for closed-loop DBS psychiatric research: Engaging end users to understand risks and improve practice 14: Saira A. Mehmood: Using Ethnographic Methods to Determine Capacity to Consent amongst Individuals Diagnosed with Chronic Mental Illnesses 15: John Aspler: Making research more ethical for adults with FASD: A story of stakeholder engagement, accommodation, and inclusion 16: Virginie Cobigo, Lynne A. Potvin, Casey Fulford, Hajer Chalghoumi, Mariam Hanna, Natasha Plourde, and Whitney Taylor: A conversation with research ethics boards about inclusive research with persons with intellectual and developmental disabilities 17: Anne Kohler: Assuming Competency Section IV: Commentaries 18: Laura Dunn and Paul Holzheimer: Commentary on:

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Author Information

M. Ariel Cascio, PhD, is a postdoctoral researcher at the Pragmatic Health Ethics Research Unit of the Institut de recherches cliniques de Montreal 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 Montreal (IRCM), Canada with joint appointments at the Universite de Montreal 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).

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