To Report or Not to Report: The Ethical Complexity Facing Researchers When Responding to Disclosures of Harm or Illegal Activities During Fieldwork with Adults with Intellectual Disabilities

References

• Ackerly, B., and J. True. 2008. “Reflexivity in Practice: Power and Ethics in Feminist Research on International Relations.” International Studies Review 10: 693–707.
   Web of Science ®Google Scholar
• Allen, B. 2009. “Are Researchers Ethically Obligated to Report Suspected Child Maltreatment? A Critical Analysis of Opposing Perspectives.” Ethics & Behavior 19 (1): 15–24.
   Web of Science ®Google Scholar
• Becker-Blease, K., and J. Freyd. 2006. “Research Participants Telling the Truth about Their Lives: The Ethics of Asking and Not Asking About Abuse.” American Psychologist 61 (3): 218–226.
   PubMed Web of Science ®Google Scholar
• Bell, L., and L. Nutt. 2012. “Divided Loyalties, Divided Expectations: Research Ethics, Professional and Occupational Responsibilities.” In Ethics in Qualitative Research, edited by T. Miller, M. Birch, M. Mauthner, and J. Jessop, 76–93. London: SAGE.
   Google Scholar
• Brown, K. 2011. “‘Vulnerability’: Handle with Care.” Ethics and Social Welfare 5 (3): 313–321.
   Google Scholar
• Brown, I., and R. Brown. 2009. “Choice as an Aspect of Quality of Life for People with Intellectual Disabilities.” Journal of Policy and Practice in Intellectual Disabilities 6 (1): 11–18.
   Web of Science ®Google Scholar
• BSA. 2017. Statement of Ethical Pracitice. London: British Sociological Association.
   Google Scholar
• Buchanan, D., and I. Warwick. 2021. “First Do No Harm: Using ‘Ethical Triage’ to Minimise Causing Harm When Undertaking Educational Research Among Vulnerable Participants.” Journal of Further and Higher Education 45 (8): 1090–1103.
   Web of Science ®Google Scholar
• Cameron, L., and J. Murphy. 2007. “Obtaining Consent to Participate in Research: The Issues Involved in Including People with a Range of Learning and Communication Disabilities.” British Journal of Learning Disabilities 35: 113–120.
   Google Scholar
• Carey, E., and C. Griffiths. 2017. “Recruitment and Consent of Adults with Intellectual Disabilities in a Classic Grounded Theory Research Study: Ethical and Methodological Considerations.” Disability & Society 32 (2): 193–212.
   Web of Science ®Google Scholar
• Department of Health. 2005. Mental Capacity Act. London: HMSO.
   Google Scholar
• Digman, C. 2021. “Lost Voices Part 1: A Narrative Case Study of Two Young Men with Learning Disabilities Disclosing Experiences of Sexual, Emotional and Physical Abuse.” British Journal of Learning Disabilities 49: 195–204.
   Web of Science ®Google Scholar
• Dixon, S., and L. Quirke. 2018. “What’s the Harm? The Coverage of Ethics and Harm Avoidance in Research Methods Textbooks.” Teaching Sociology 46 (1): 12–24.
   Web of Science ®Google Scholar
• Donnelly, M. 2016. “Best Interests in the Mental Capacity Act: Time to Say Goodbye?” Medical Law Review 24 (3): 318–332.
   PubMed Web of Science ®Google Scholar
• Dunn, M. 2020. Research Ethics in Social Care. Methods Review. London: NIHR School for Social Care Research.
   Google Scholar
• Erikson, S., A. HÖglund, and G. Helgesson. 2008. “Do Ethical Guidelines Give Guidance? A Critical Examination of Eight Ethics Regulations.” Cambridge Quarterly of Healthcare Ethics 17 (1): 15–29.
   PubMed Web of Science ®Google Scholar
• ESRC. no date. “Research Ethics Guidance” [Online] Accessed 14th July 2022. https://www.ukri.org/councils/esrc/guidance-for-applicants/research-ethics-guidance/.
   Google Scholar
• Fletcher-Watson, S., J. Adams, K. Brook, T. Charman, L. Crane, J. Cusack, S. Leekam, D. Milton, J. R. Parr, and E. Pellicano. 2019. “Making the Future Together: Shaping Autism Research Through Meaningful Participation.” Autism 23 (4): 943–953.
   PubMed Web of Science ®Google Scholar
• Fyson, R., and D. Kitson. 2007. “Independence or Protection – Does It Have to Be a Choice? Reflections on the Abuse of People with Learning Disabilities in Cornwall.” Critical Social Policy 27 (3): 426–436.
   Web of Science ®Google Scholar
• Goodley, D. 2021. Disability and Other Human Questions. Bingley: Emerald.
   Google Scholar
• Greaney, A.-M., A. Sheehy, C. Heffernan, J. Murphy, S. Mhaolrunaign, E. Heffernan, and G. Brown. 2012. “Research Ethics Application: A Guide for the Novice Researcher.” British Journal of Nursing 21 (1): 38–43.
   PubMedGoogle Scholar
• Guillemin, M., and L. Gillam. 2004. “Ethics, Reflexivity, and “Ethically Important Moments” in Research.” Qualitative Inquiry 10 (2): 261–280.
   Web of Science ®Google Scholar
• Gustafson, D., and F. Brunger. 2014. “Ethics, “Vulnerability,” and Feminist Participatory Action Research with a Disability Community.” Qualitative Health Research 24 (7): 997–1005.
   PubMed Web of Science ®Google Scholar
• Hardicre, J. 2014. “An Overview of Research Ethics and Learning from the Past.” British Journal of Nursing 23 (9): 483–486.
   PubMedGoogle Scholar
• Harding, S., and K. Norberg. 2005. “New Feminist Approaches to Social Science Methodologies: An Introduction.” Signs 30 (4): 2009–2015.
   Web of Science ®Google Scholar
• Holmes, A. G. D. 2020. “Researcher Positionality – a Consideration of Its Influence and Place in Qualitative Research – a New Researcher Guide.” International Journal of Education 8 (4): 1–10.
   Google Scholar
• Horne, M. 1999. ) Values in Social Work. eBook published 2019. London: Routledge.
   Google Scholar
• House of Commons. 2020. Research Briefing: Child Protection: Duties to Report Concerns. [Online] Accessed 3rd August 2022. https://commonslibrary.parliament.uk/research-briefings/sn06793/.
   Google Scholar
• Huysamen, M. 2022. A Critical Reflexive Approach to Sex Research. Interviews with Men Who Pay for Sex. Abingdon: Routledge.
   Google Scholar
• Iacono, T. 2006. “Ethical Challenges and Complexities of Including People with Intellectual Disability as Participants in Research.” Journal of Intellectual & Developmental Disability 31 (3): 173–179.
   PubMed Web of Science ®Google Scholar
• Iphofen, R., and M. Tolich. 2018. “Foundational Issues in Qualitative Research Ethics.” In The Sage Handbook of Qualitative Research Ethics, edited by R. Iphofen and M. Tolich, 1–17. London: SAGE.
   Google Scholar
• IRAS. no date a. Question A23 [Online] Accessed 1st July 2022. https://www.myresearchproject.org.uk/.
   Google Scholar
• IRAS. no date b. Question A24: Benefits to the research participant [Online] Accessed 1st July 2022. https://www.myresearchproject.org.uk/.
   Google Scholar
• Israel, M., and I. Hay. 2006. Research Ethics for Social Scientists: Between Ethical Conduct and Regulatory Compliance. London: Sage.
   Google Scholar
• Kennan, D., A. Fives, and J. Canavan. 2012. “Accessing a Hard to Reach Population: Reflections on Research with Young Carers in Ireland.” Child and Family Social Work 17: 275–283.
   Web of Science ®Google Scholar
• Krasse, B. 2001. “The Vipeholm Dental Caries Study: Recollections and Reflections 50 Years Later.” Journal of Dental Research 80 (9): 1785–1788.
   PubMed Web of Science ®Google Scholar
• Lippold, T., and J. Burns. 2009. “Social Support and Intellectual Disabilities: A Comparison Between Social Networks of Adults with Intellectual Disability and Those with Physical Disability.” Journal of Intellectual Disability Research 53 (5): 463–473.
   PubMed Web of Science ®Google Scholar
• Lowman, J., and T. Palys. 2014. “The Betrayal of Research Confidentiality in British Sociology.” Research Ethics 10 (2): 97–118.
   Google Scholar
• Lynch, H. 2018. “‘Opening Closed Doors: Promoting IRB Transparency.” Journal of Law Medicine & Ethics 46: 145–158.
   Web of Science ®Google Scholar
• Martino, A., and A. Schormans. 2018. “When Good Intentions Backfire: University Research Ethics Review and the Intimate Lives of People Labeled with Intellectual Disabilities.” Forum Qualitative Sozialforschung / Forum: Qualitative Social Research 19 (3): 1–18.
   Google Scholar
• McDonald, K., N. Conroy, and R. Olick. 2017. “What’s the Harm? Harms in Research with Adults with Intellectual Disability.” American Journal of Intellectual and Developmental Disability 122 (1): 78–92.
   PubMedGoogle Scholar
• McDonald, K., and C. Kidney. 2012. “What is Right? Ethics in Intellectual Disabilities Research.” Journal of Policy and Practice in Intellectual Disabilities 9 (1): 27–39.
   Web of Science ®Google Scholar
• McDonald, K., N. Schwartz, C. Gibbons, and R. Olick. 2015. “‘You Can’t Be Cold and Scientific’: Community Views on Ethical Issues in Intellectual Disability Research.” Journal of Empirical Research on Human Research Ethics 10 (2): 196–208.
   PubMed Web of Science ®Google Scholar
• Mullings, B. 1999. “Insider or Outsider, Both or Neither: Some Dilemmas of Interviewing in a Cross-cultural Setting.” Geoforum; Journal of Physical, Human, and Regional Geosciences 30: 337–350.
   Web of Science ®Google Scholar
• NCPHSBBR. 1979. “Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.” Department of Health, Education and Welfare, Office of the Secretary, protection of Human Subjects.
   Google Scholar
• Nind, M. 2008. “ESRC National Centre for Research Methods Review Paper.” Conducting qualitative research with people with learning, communication and other disabilities: Methodological challenges. ESRC National Centre for Research Methods.
   Google Scholar
• NMC. 2015. The Code. Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates. London: Nursing & Midwifery Council.
   Google Scholar
• Oliver, M. 1992. “Changing the Social Relations of Research Production.” Disability, Handicap and Society 7 (2): 101–114.
   Google Scholar
• Preston-Shoot, M. 2001. “Evaluating Self-determination: An Adult Protection Case Study.” The Journal of Adult Protection 3 (1): 4–14.
   Google Scholar
• Slater, J. 2015. Youth and Disability: A Challenge to Mr Reasonable. Farnham: Ashgate: Routledge.
   Google Scholar
• Spellecy, R., and K. Busse. 2021. “The History of Human Subjects Research and Rationale for Institutional Review Board Oversight.” Nutrition in Clinical Practice 36 (3): 560–567.
   PubMed Web of Science ®Google Scholar
• SRA. 2021. Research Ethics Guidelines. London: Social Research Association.
   Google Scholar
• Stone, E., and M. Priestley. 1996. “Parasites, Pawns and Partners: Disability research and the role of nondisabled researchers.” British Journal of Sociology 47 (4): 699–716.
   PubMed Web of Science ®Google Scholar
• Surmiak, A. 2020. “Should We Maintain or Break Confidentiality? The Choices Made by Social Researchers in the Context of Law Violation and Harm.” Journal of Academic Ethics 18: 229–247.
   Web of Science ®Google Scholar
• Swain, J., B. Heyman, and M. Gillman. 1998. “Public Research, Private Concerns: Ethical Issues in the Use of Open-ended Interviews with People Who Have Learning Difficulties.” Disability & Society 13 (1): 21–36.
   Web of Science ®Google Scholar
• Tilly, L. 2019. “Afraid to Leave the House: Issues Leading to Social Exclusion and Loneliness for people with a Learning Disability.” Tizard Learning Disability Review 24 (4): 168–175.
   Web of Science ®Google Scholar
• Tilly, L. 2020. “Exploring Ethical Issues Arising from Ten Years of Inclusive Research with People with a Learning Disability.” Sentio 2: 26–33.
   Google Scholar
• Tuffrey-Wijne, I., J. Bernal, and S. Hollins. 2008. “Doing Research on People with Learning Disabilities, Cancer and Dying: Ethics, Possibilities and Pitfalls.” British Journal of Learning Disabilities 36: 185–190.
   Google Scholar
• University of Sheffield. 2020. Research Ethics Policy Note no.12: Research Involving Illegal Activities. [Online] Accessed 3rd August 2022. https://www.sheffield.ac.uk/polopoly_fs/1.112762!/file/Research-Ethics-Policy-Note-12.pdf.
   Google Scholar
• Vanclay, F., J. Baines, and C. Taylor. 2013. “Principles for Ethical Research Involving Humans: Ethical Professional Practice in Impact Assessment Part 1.” Impact Assessment and Project Appraisal 31 (4): 243–253.
   Web of Science ®Google Scholar
• Virokannas, E., S. Liuski, and M. Kuronen. 2020. “The Contested Concept of Vulnerability – A Literature Review.” European Journal of Social Work 23 (2): 327–339.
   Web of Science ®Google Scholar
• Von Unger, H., H. Dilger, and M. Schönhuth. 2016. “Ethics Reviews in the Social and Cultural Sciences? A Sociological and Anthropological Contribution to the Debate.” Forum: Qualitative Social Research 17 (3): 1–12.
   Google Scholar
• Wiles, R., G. Crow, V. Charles, and S. Heath. 2007. “Informed Consent and the Researcher Process: Following Rules or Striking Balances?” Sociological Research Online 12 (2): 99–110.
   Web of Science ®Google Scholar
• Wiles, R., G. Crow, S. Heath, and V. Charles. 2008. “The Management of Confidentiality and Anonymity in Social Research.” International Journal of Social Research Methodology 11 (5): 417–428.
   Web of Science ®Google Scholar
• Wishart, G. 2003. “The Sexual Abuse of People with Learning Difficulties: Do We Need a Social Model Approach to Vulnerability?” The Journal of Adult Protection 5 (3): 14–27.
   Google Scholar