Research Involving Participants with Cognitive Disability and Differences: Ethics, Autonomy, Inclusion, and Innovation

by M. Ariel Cascio, Eric Racine

Overview

Research participants who have cognitive disabilities and differences 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. 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.

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.

The book 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/behavioural research. The book will be valuable for anyone performing research involving these populations - from the fields of neuropsychology, neurology, psychiatry, and neuroscience.

Product Details

ISBN-13:	9780198824343
Publisher:	Oxford University Press
Publication date:	11/05/2019
Pages:	304
Product dimensions:	9.80(w) x 6.80(h) x 0.90(d)

About the Author

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).

Table of Contents

Section I: Conceptual Frameworks1: Ongoing consent in situations of cognitive vulnerability: Special considerations in implanted neural device trials,Lauren Sankary and Paul Ford2: Who Decides? Legal Changes to Facilitate Inclusion of Participants with Impaired Cognition in Research,Megan Wright3: Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research,Britteny Howell and Karrie Shogren4: Research Cohorts: Diverse Research Subjects, Similar Remedies to Errors in Consent,Deborah Barnbaum5: Autism, Autonomy, and Research,Kenneth A RichmanSection II: Challenges6: Disability, Vulnerability, and the Capacity to Consent,Stephanie Patterson and Pamela Block7: REB/IRB Variability and Other Ethical Challenges in Multi-site Research Involving Participants on the Autism Spectrum,Mackenzie Salt8: Bridging worlds: can anthropology be a communicational therapy?,Leonardo Campoy9: Challenges of Participating in Research about Living with MCI among Disabled Veterans,Christine Schneider and Eva Kahana10: Mediators of Inclusion: Challenges to Including Adults with Mild Intellectual Disability in Qualitative Research,Vanessa Cox, Treena Orchard, Pamela Cushing, and Elizabeth Anne Kinsella11: Shifting Identities: Research on Macro and Micro Aspects of ID College Programs,Jack TrammellSection III: Successes12: Recognizing the voices of children with 'cognitive impairments' in research,Marjorie Montreuil, Gail Teachman, and Franco Carnevale13: Informed consent for closed-loop DBS psychiatric research: Engaging end users to understand risks and improve practice,Eran Klein14: Using Ethnographic Methods to Determine Capacity to Consent amongst Individuals Diagnosed with Chronic Mental Illnesses,Saira A. Mehmood15: Making research more ethical for adults with FASD: A story of stakeholder engagement, accommodation, and inclusion,John Aspler16: 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 Taylor17: Assuming Capacity: Ethical Participatory Research with Adolescents and Adults with Down Syndrome,Anne KohlerSection IV: Commentaries18: Are Patients with Psychiatric Disorders Laura Dunn and Paul Holzheimer19: Ongoing Consent for the Inverse Problematic to Loss of Capacity: Commentary on Sankary and Ford (Chapter 1),Caitlin Courchesne and Judy Illes20: Differing Understandings of Informed Consent: Commentary on Howell and Shogren (Chapter 3),Jack Trammell21: The Mindset of Surrogates and Inclusivity Research: Commentary on Howell and Shogren (Chapter 3),Deborah Barnbaum22: Drawing Distinctions Among Different Types of Research on Persons with Autism: Commentary on Richman (Chapter 5),Deborah Barnbaum23: A Critical Lens on Disability and Consent: Commentary on Patterson and Block (Chapter 6) and on Mehmood (Chapter 14),Allison Bloom24: Repurposing Ethnography to Assess Consent Capacity: Commentary on Mehmood (Chapter 14),Megan Wright25: Using Ethnographic Methods: Commentary on Mehmood (Chapter 14),Jack Trammell26: Joining Voices: Commentary on Kohler (Chapter 17),Anne Kohler and Ben Majewski27: What Stories Tell? In Praise of Anthropology: Commentary on Kohler (Chapter 17),Leonard Campoy28: Melissa Park and Donald Fogelberg29: Toward a Research Ethics Culture of Inclusion and Participation: Commentary on All Chapters,Eric Racine30: Vulnerability, Empowerment, and Dissent-The Importance of Saying No: Commentary on All Chapters,M. Ariel Cascio