Index
Advances in Disability Research Ethics
ISBN: 978-1-78769-312-8, eISBN: 978-1-78769-311-1
ISSN: 2398-6018
Publication date: 2 September 2024
This content is currently only available as a PDF
Citation
(2024), "Index", Good, A., Elliott, I. and Mallon, S. (Ed.) Advances in Disability Research Ethics (Advances in Research Ethics and Integrity, Vol. 11), Emerald Publishing Limited, Leeds, pp. 169-175. https://doi.org/10.1108/S2398-601820240000011010
Publisher
:Emerald Publishing Limited
Copyright © 2024 Anne Good, Iris Elliott and Sharon Mallon
INDEX
Ableism
, 4–5, 8–9, 14, 73–74, 92
Ableist perspectives
, 79
Academic research organisations
, 81
Accessibility
, 3, 18, 38
Accommodations
, 55
Accord
, 22
Administrative and procedural issues
, 126–127
Administrative data
, 37–39
concerns
, 39–40
Advances in Disability Research Ethics
, 1, 7–10
Ageism
, 5
2030 Agenda for Sustainable Development
, 34, 41
Allies
, 93
consent
, 97–98
findings
, 98–104
implications of research findings
, 105–106
inaugural dialogues and retreat
, 94–95
intersectionality
, 95–96
lived experience and allies at intersections
, 104–105
methods
, 96–97
positionality
, 93–94
recommendations
, 106–108
Allyship
, 95–96
allyship-as-action
, 95–96
system
, 9
Ambition of human rights-based research
, 9
Anti-Discrimination Act (1991)
, 89
Artificial intelligence (AI)
, 43
Asian and Pacific Islander
, 97
Assistive technologies
, 19
At-risk population
, 56
Australian National Health and Medical Research Council
, 24
Australian National Statement on Ethical Conduct in Human Research (ANSECHR)
, 23–24
Australian National Statement on Human Research
, 16
Australian National Statement on Research Ethics
, 15
Australian reform model of deep listening
, 31
Australian Research Council and Universities Australia
, 24
Awareness raising
, 3
Beneficence principle
, 4
Benefit-sharing
, 142
Big data
, 43–44
Biopsychosocial model
, 53
Black, Indigenous, and People of Color (BIPOC)
, 9, 93, 97
Black people
, 92
Canadian Human Rights Commission (CHRC)
, 46n4
Censuses
, 36, 60–61
Centre for Disability Research and Policy (CDRP)
, 83
Child Functioning Module
, 59, 65
Co-design
, 116
Co-produced research
, 78
Co-production
, 115
in disability research
, 115–118
Co-Researcher Collective
, 116
Cognition
, 61–62
Collective rights
, 44
Committee on Publication Ethics (COPE)
, 152
Committee on the Rights of Persons with Disabilities
, 42
Committees
, 76
Communicating evidence for impact (CEFI)
, 9, 140
core research competency and ethical requirement
, 145–146
grounded in culture of inclusion, intersectionality and allyship
, 147–149
legal and moral imperative
, 143–144
participatory process
, 146–147
propositions
, 141–149
public good
, 141–143
Communication
, 61–62, 139
Community-based data collection
, 40
Comprehensiveness
, 38
Confidentiality
, 18
and safety of participants
, 126
Consent
, 4, 97–98
Consumers Health Forum of Australia (2020)
, 76
Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW)
, 140
Convention on the Elimination of Racial Discrimination (CERD)
, 140
Convention on the Rights of the Child (CRC)
, 140
Coresearchers
, 27
COVID-19 pandemic
, 65, 160
impact of Covid on data collections
, 65
Criminal justice
, 95
experiences with criminal justice systems
, 99–100
involvement
, 100–103
Crisis Helping Out On The Streets model (CAHOOTS model)
, 107
Culturally And Linguistically Diverse (CALD)
, 29
Culturally and Linguistically Diverse communities (CALD communities)
, 27
Cut points
, 58–59
Data
, 34
collection
, 50
collection tools to support monitoring
, 60–61
disaggregation
, 37
framework for data protection
, 43
Deaf community
, 28
Declaration on Human Rights
, 6
Definitions
, 50
in research
, 50–51
Demographic and health surveys
, 36
Dignity of risk
, 77
Disability
, 8, 19, 21, 25, 34, 45–46, 51, 54, 92
approaches to defining population with disabilities
, 53–57
assessments
, 38
awareness training
, 143
case of
, 51–52
as continuum
, 58–65
data
, 60
data sources
, 36–40
difficulties in functioning
, 56–57
disability-specific surveys
, 37
ethical and legal issues in data collection
, 40–45
gap
, 50, 65–66
harmonisation
, 66–67
limitations in participation
, 54–56
need to identify population with
, 52–53
research
, 50, 115–118, 139
vulnerability
, 74–75
Disability Discrimination Act 1992
, 81
Disability Persons Organisations (DPOs)
, 144
Disability research ethics
, 1, 30
in times of crisis
, 164–166
Disability Research on Independent Living and Learning (DRILL)
, 114–115
administrative and procedural issues
, 126–127
confidentiality and safety of participants
, 126
Ethics Committee
, 119–121
evaluation of DRILL Ethics Committee
, 122
key interactions between ethics committee and research projects
, 122–123
negotiation of informed consent
, 124–126
Programme
, 119–121
Disability Rights Movement (DRM)
, 6
Disabled individuals
, 20
Disabled people
, 15, 118, 139
Disabled Persons Organisations (DPOs)
, 120, 127, 142
Disaggregation
, 37, 54–55, 61
Dissemination
, 140
Distributive fairness
, 142–143
Division for Inclusive Social Development (DISD)
, 144
Easy Read materials
, 125
Easy read participant consent
, 132–135
Education
, 37, 56
Education Management Information System in Fiji
, 38
Educators
, 151
Emancipatory research
benefits of
, 79–80
challenges
, 78–79
ethical shift
, 77–78
Employment
, 56
Environmental accommodations and supports
, 56
Equality
, 3, 82
Ethical and legal issues in data collection
, 40
big data
, 43–44
framework for data protection
, 43
indicators and data collection
, 41
participation and community-based data collection
, 40
principles for collection and use of indigenous data
, 44–45
privacy and data collection
, 41–43
right to access information and data
, 44
Ethical decision making
, 76
Ethical leadership
, 30
Ethics
, 75
generic application of
, 6–7
negotiations
, 127
review processes
, 114
Ethics committee
, 114
co-production in disability research
, 115–118
ethics process in social research
, 118–123
Ethics process in social research
, 118
Drill Programme and Drill Ethics Committee
, 119–121
Evaluation
, 39
Exclusionary practices
, 25
Expertise
, 79
Face-to-face meetings
, 127
Facilitators
, 26
Fairness-in-exchange approach
, 142
Fear
, 101–102
First People
, 27
Focus group/conversation guides
, 111–112
Four Nations’ projects
, 120
Functional domains
, 57
Fundamental freedoms
, 18
Funders
, 151–152
Generic approach
, 5
in research ethics
, 163–166
Generic principles
, 19–20
Generic research ethics
, 14
Global Activity Limitation Indicator (GALI)
, 36, 55
Global Alliance of National Human Rights Institutions Home (GANHRI)
, 144
Good practice in ethics review
, 115
Harm
, 101
Harmonisation
, 66–67
Hearing
, 61
Helsinki principles
, 5
Heterosexism
, 5
Household income and expenditure surveys
, 36
Household surveys
, 36
Human rights
, 18, 92
and equality-based research ethics
, 18
human rights-based research
, 138
limits of generic in
, 5–6
revising and expanding core principles
, 18
statistics and data collection
, 18–20
Hybrid matrices
, 98
Inaugural Dialogues and Retreat
, 94–95
Inclusion
, 18, 39, 41, 77
Inclusion of people with disabilities in research
, 24–26
Inclusive language
, 27–28
Inclusive research
lived experience narratives
, 82–84
recruit and advance careers of researchers with disability
, 82
roadmap to
, 80
systemwide understanding of vulnerability, disability, and accessibility
, 81
timely accommodations and adjustments for researchers with disability
, 82
zero tolerance for ableism
, 81
Indicators and data collection
, 41
Indigenous data, principles for collection and use of
, 44–45
Indigenous Peoples
, 44
Indigenous/Native American
, 97
Infodemic
, 138
Informed consent
, 76
Inherent vulnerability
, 75
Institutional Review Board (IRB)
, 96
Integrated ethics
, 6
International Classification of Functioning (ICF)
, 19, 73
International Labour Organisation
, 66
Intersection of Injustice, Disability, and Human Rights
, 93
Intersectional ethics
, 6
Intersectionality
, 29–30, 59, 80, 92, 95–96
Irish Disabled Persons Organisations (DPOs)
, 10
Justice
, 103–104
Labour force surveys
, 36–37
Latino/Latina/Latinx/Hispanic
, 97
Legal obligations
, 40
LGBTQI communities
, 27
Lived experience
, 72, 79–80
narratives
, 82
negative experiences in academy and key learnings
, 83–84
safe environment
, 83
stop disrespecting and start investing in lived experience researchers
, 83
Living Life to the Fullest
, 116
Measurements
, 51
Medicaid
, 93
Medical examinations
, 38
Mental health
, 92
experiences with
, 99–100
system involvement
, 100–103
Meso-environment
, 66
Micro-environment
, 66
Migrants
, 27
Mixed Race
, 97
Model Disability Survey (MDS)
, 35
Monitoring
, 34, 39
National Disability Insurance Scheme (NDIS)
, 29–30
National Health and Medical Research Council
, 75
National Lottery Community Fund
, 119
Negative experiences in academy and key learnings
, 83–84
Negative feelings
, 101–102
Negotiation of informed consent
, 124–126
Network of Dementia Voices (DEEP)
, 116
Neurodiverse people
, 28
New Human Rights laws
, 6
Non-ableist research ethics
, 5
Non-discrimination
, 3
Office of the United Nations High Commissioner for Human Rights (OHCHR)
, 41
Online accessibility standards
, 29
Organisations of People with Disabilities (OPDs)
, 8, 45
Participation
, 3, 20, 40
Participatory research
, 116
Peer research
, 116
Personal data
, 46n9
protection
, 41
Persons with disabilities
, 51–52, 58
Physical accessibility
, 29
Police
, 102–103
experiences with
, 99–100
interactions
, 102
involvement
, 100–103
Policing
, 92
experiencing multiple forms of
, 100
Policy makers
, 59
Population with disabilities
, 56
approaches to defining
, 53–57
Population-based data
, 42
Populations
, 56
Positionality
, 93–94
Positivist medical model
, 118
Post-World War II world
, 5
Practitioners
, 151
Privacy
, 18, 20
and data collection
, 41–43
requirements
, 42
Process indicators
, 41
Promise of Assistive Technology to Enhance Activity and Work Participation, The
, 19
PROmoting integrity in the use of RESearch results project (PRO-RES project)
, 15–17, 30
formal Agreement
, 22
revising and expanding PRO-RES toolkit
, 22–23, 25
PT Kereta Api Indonesia
, 43
Public good
, 141–143
Public transportation
, 37
Publishers
, 152–153
‘Quality’ in disability research
, 14
Questions
, 57
Race/ethnicity
, 92
Racism
, 5–6, 94
Recruitment
, 96–97
strategies
, 25
Reference groups
, 27
Refugees/asylum seekers
, 27
Reliability
, 38
Research
, 72
definitions in
, 50–51
ethics
, 119
participation
, 24–25
Research Ethics Committees (RECs)
, 9, 150
Researchers
, 151–152
with disability
, 89–90
Respect
, 18–20
Respect principle
, 4
Right to access information and data
, 44
Right to privacy
, 41, 46n7
Rights
, 103–104
Sample surveys
, 61
Sampling
, 96–97
Scientific, Trustworthy, and Ethical evidence for Policy (STEP)
, 22
Scientific knowledge
, 25
Sector-specific surveys
, 36
Seeing
, 61
Self-care
, 61
Self-identification
, 56
Sense-making
, 102
Sexism
, 5–6
Situational vulnerability
, 75
Social action
, 107
Social model
, 53
Social protection
, 37
Social research
, 115
States Parties
, 18, 53
to CRPD
, 149–150
Statistical confidentiality
, 42, 46n11
‘STEP ACCORD’
, 16–17
Stewardship
, 20–21
Structural indicators
, 41
Structural racism
, 94
Surveys
, 36–37
Surviving Race
, 93–94, 106
Sustainable Development Goals (SDG)
, 35, 52
Sustained interactivity model
, 143
Systems-level oppression
, 100
Transparency
, 50
UK General Data Protection Regulation
, 124
UN Declaration
, 5
United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)
, 1–2, 7, 14, 34, 72, 89, 93, 115, 159–161
accommodations
, 28–30
ANSECHR
, 23–24
Australian National Statement on Human Research
, 16
characteristics
, 3–4
cross-cutting principles and practices
, 3
design and conduct of research
, 26–28
guiding principles
, 2–3
human rights and equality-based research ethics
, 18–20
implications for ethical disability research practice
, 161–163
inclusion of people with disabilities in research
, 24–26
intersectionality
, 29–30
online accessibility standards
, 29
outputs
, 29
physical accessibility
, 29
PRO-RES formal Agreement
, 22
PRO-RES project
, 15–17
revising and expanding PRO-RES toolkit
, 22–23
significance of omissions
, 30
stewardship
, 20–21
themes
, 30–31
United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP)
, 140
United Nations International Children’s Emergency Fund (UNICEF)
, 37
Universities
, 73
Vedic principles
, 15
Voice of the disability movement
, 31
Voices of disabled people
, 7
Vulnerability
, 20, 25, 72
ableist conceptualisations of
, 142
intersectionality
, 80
narrative surrounding research participants and researchers with disabilities
, 75–76
as positive
, 76–77
roadmap to inclusive research
, 80–84
shifting researc h paradigms
, 77–80
traditional constructions
, 74–75
Walking
, 61
Washington City Group on Disability Statistics (WG)
, 35, 37
Washington Group Extended Set
, 63–64
Washington Group on Disability Statistics
, 50
Washington Group Short Set
, 60–63
Washington Group/UNICEF Module on Child Functioning
, 64–65
WCAG2
, 23, 29
White Allies
, 93
World Bank Guidebook for Designing Household Survey Questionnaires
, 36–37
Young people
, 27
Zero tolerance
for ableism
, 81
approach
, 9
- Prelims
- Introduction
- Chapter 1: Systemic Change in Research Ethics for The UNCRPD Knowledge Base: Mapping A Way Forward
- Chapter 2: Ethical and Legal Issues in The Collection, Use, and Dissemination of Data on Disability
- Chapter 3: The Importance of Definition of Terms in Disability Research
- Chapter 4: Ethical Inclusion and Participation of People with Disability in Research: Problematising Vulnerability
- Chapter 5: On Surviving Race with Allies: Disability, Race/Ethnicity, and Human Rights
- 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
- Chapter 7: Communicating Evidence for Impact
- Chapter 8: Conclusion: Directions for Future Research
- Index