Research involving participants with cognitive disability and difference : ethics, autonomy, inclusion, and innovation / M. Ariel Cascio and Eric Racine
- Oxford scholarship online
- Machine generated contents note: SECTION 1 CONCEPTUAL FRAMEWORKS -- 1.Ongoing Consent in Situations of Cognitive Vulnerability: Special Considerations in Implanted Neural Device Trials / Paul J. Ford -- 2.Who Decides? Legal Changes to Facilitate Inclusion of Participants with Impaired Cognition in Research / Megan S. Wright -- 3.Differing Understandings of Informed Consent Held by Research Institutions, People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research / Karrie A. Shogren -- 4.Research Cohorts: Diverse Research Subjects, Similar Remedies to Errors in Consent / Deborah R. Barnbaum -- 5.Autism, Autonomy, and Research / Kenneth A. Richman -- SECTION 2 CHALLENGES -- 6.Disability, Vulnerability, and the Capacity to Consent / Pamela Block -- 7.Research Ethics Board/Institutional Review Board Variability and Other Ethical Challenges in Multi-Site Research Involving Participants on the Autism Spectrum / Mackenzie Salt -- 8.Bridging Worlds: Can Anthropology Be a Communication Therapy? / Leonardo Carbonieri Campoy -- 9.Challenges of Participating in Research About Living with Mild Cognitive Impairment Among Disabled Veterans / Eva Kahana -- 10.Mediators of Inclusion: Challenges to Including Adults with Mild Intellectual Disability in Qualitative Research / Elizabeth Anne Kinsella -- 11.Shifting Identities: Research on Macro and Micro Aspects of Intellectual Disability College Programs / Jack Trammell -- SECTION 3 SUCCESSES -- 12.Recognizing the Voices of All Children, Including Those with "Cognitive Impairments," in Research / Franco A. Carnevale -- 13.Informed Consent for Next-Generation Deep Brain Stimulation Psychiatric Research: Engaging End Users to Understand Risks and Improve Practice / Eran Klein -- 14.Using Ethnographic Methods to Determine Capacity to Consent in Individuals Diagnosed with Chronic Mental Illnesses / Saira A. Mehtnood -- 15.Making Research More Ethical for Adults with Fetal Alcohol Spectrum Disorder: A Story of Stakeholder Engagement, Accommodation, and Inclusion / John Aspler -- 16.A Conversation with Research Ethics Boards About Inclusive Research with Persons with Intellectual and Developmental Disabilities / Whitney D. Taylor -- 17.Assuming Capacity: Ethical Participatory Research with Adolescents and Adults with Down Syndrome / Anne Kohler -- SECTION 4 COMMENTARIES -- 18.Are Patients with Psychiatric Disorders "Uniquely" Vulnerable in the Context of DBS Research? Commentary on Klein (Chapter 13) / Paul E. Holtzheimer -- 19.Ongoing Consent for the Inverse Problematic to Loss of Capacity: Commentary on Sankary and Ford (Chapter 1) / Judyllles -- 20.Differing Understandings of Informed Consent: Commentary on Howell and Shogren (Chapter 3) / Jack Trammell -- 21.The Mindset of Surrogates and Inclusivity Research: Commentary on Howell and Shogren (Chapter 3) / Deborah R. Barnbaum -- 22.Drawing Distinctions Among Different Types of Research on Persons with Autism: Commentary on Richman (Chapter 5) / Deborah R. Barnbaum -- 23.A Critical Lens on Disability and Consent: Commentary on Patterson and Block (Chapter 6) and on Mehmood (Chapter 14) / Allison Bloom -- 24.Repurposing Ethnography to Assess Consent Capacity: Commentary on Mehmood (Chapter 14) / Megan S. Wright -- 25.Using Ethnographic Methods: Commentary on Mehmood (Chapter 14) / Jack Trammell -- 26.Joining Voices: Commentary on Kohler (Chapter 17) / Benjamin Majewski -- 27.What Stories Tell? In Praise of Anthropology: Commentary on Kohler (Chapter 17) / Leonardo Carbonieri Campoy -- 28."Caught Between the Suffering and the Good": Commentary on Campoy (Chapter 8) / Donald Fogelberg -- 29.Toward a Research Ethics Culture of Inclusion and Participation: Commentary on All Chapters / Eric Racine -- 30.Vulnerability, Empowerment, and Dissent---The Importance of Saying No: Commentary on All Chapters / M. Ariel Cascio.
- Research participants who have cognitive disabilities and differences may be considered a vulnerable population. This volume provides multidisciplinary insights into the ethical aspects of research that includes these populations, including conditions such as intellectual disability, autism, mild cognitive impairment, and psychiatric diagnoses.
- 9780191863165 (ebook)
- Audience Notes:
- This edition also issued in print: 2019.
- Bibliography Note:
- Includes bibliographical references and index.
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