
Research Involving Participants with Cognitive Disability and Differences
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Content
- 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: "Informed consent for next generation DBS psychiatric research: Engaging end users to understand risks and improve practice"
- 19: Caitlin Courchesne and Judy Illes: Response to Sankary and Ford: Ongoing Consent for the Inverse Problematic to Loss of Capacity
- 20: Jack Trammell: Differing Understandings of Informed Consent
- 21: Deborah Barnbaum: 18. Comments on Britteny M. Howell and Karrie A. Shogren's "Differing Understandings of Informed Consent Held by Research Institutions,People with Intellectual Disability, and Guardians: Implications for Inclusive, Ethical Research"
- 22: Deborah Barnbaum: 18. Comments on Kenneth A. Richman's "Autism, Autonomy, and Research"
- 23: Allison Bloom: Commentary
- 24: Megan Wright: Repurposing Ethnography to Assess Consent Capacity
- 25: Jack Trammell: Using Ethnographic Methods
- 26: Anne Kohler and Ben Majewski: Commentary on Assuming Capacity: Ethical Participatory Research with Adolescents and Adults with Down Syndrome
- 27: Leonard Campoy: What stories tell? In praise of anthropology
- 28: Melissa Park and Donald Fogelberg: Commentary on Bridging Worlds: Can Anthropology be a Communication Therapy?
- 29: Eric Racine: Toward a research (ethics) culture of inclusion and participation
- 30: M. Ariel Cascio: 18. Vulnerability, empowerment, and dissent - The importance of saying no
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