Full Description
There are currently over 1.3 billion people globally who experience exclusion and inequality rooted in persistent and deep ableism. Quality research with and about disabled people is vital to changing this situation. Such research presents ethical challenges and complexities which have not been given the attention they deserve if we are to advance disability rights as promised by the UNCRPD and other equality and human rights commitments.
Considering important aspects of general ethical principles, including respect, consent, privacy and confidentiality, this volume of Advances in Research Ethics and Integrity fills that gap. It does so while also recognising the broad scope, diversity and significant size of the disabled population.
Experienced researchers from the field examine processes of disablement and the specificities which arise when researching the lives of people with physical, mental, intellectual or sensory impairments. Authors also incorporate social factors such as gender, ethnicity and age and how they interact with disability. Building from the context set by the UNCRPD and other ethical guidance, chapters explore topics such as ensuring quality in data, the importance of defining terms, ethical inclusion, use and misuse of the term vulnerability, the intersection of race and ethnicity, the role of ethics committees and other approval processes and maximising research impact.
Contents
Introduction; Sharon Mallon, Anne Good and Iris Elliott
Chapter 1. Systemic Change in Research Ethics for the UNCRPD Knowledge Base: Mapping a Way Forward; Anne Good and Gary Allen
Chapter 2. Ethical and Legal Issues in the Collection, Use, and Dissemination of Data on Disability; Daniel Mont
Chapter 3. The Importance of Definition of Terms in Disability Research; Jennifer Madans
Chapter 4. Ethical Inclusion and Participation of People with Disability in Research: Problematising Vulnerability; Damian Mellifont, Annmaree Watharow, Sheelagh Daniels-Mayes, Jennifer Smith-Merry and Mary-Ann O'Donovan
Chapter 5. On Surviving Race with Allies: Disability, Race / Ethnicity and Human Rights; Celia Brown, Clarencetine (Teena) Brooks, Jonathan P. Edwards, Chyrell D. Bellamy and Kathleen O'Hara.
Chapter 6. The Role of an Ethics Committee in Co-produced Research: The Experience of the Disability Research on Independent Living and Learning (DRILL) Project; Alison Koslowski, Bronagh Byrne, Jackie Gulland and Peter Scott
Chapter 7. Communicating Evidence for Impact; Iris Elliott
Chapter 8. Conclusions; Iris Elliott, Sharon Mallon and Anne Good
