Ethical Research Involving People with Intellectual Disabilities

The International Handbook of Applied Research in Intellectual Disabilities

Volumn , Issue , 2008, Pages 61-82

  Grif, Tim ^a   Balandin, Susan ^b  

^a UNIVERSITY OF WESTERN SYDNEY   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

Author keywords

Emotional distress; Ethical guidelines; Ethical problems; Ethical research; Inherent costs and potential risks

Indexed keywords

EID: 84948956797     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1002/9780470713198.ch3     Document Type: Chapter

References (48)

1. Alm, N. (1994). Ethical questions in AAC research. In J. Brodin & E. Bjorck-Akesson (Eds) Proceedings from the Third ISAAC Research Symposium in Augmentative and Alternative Communication (pp. 98-104). Jonkoping, Sweden: Jonkoping University Press.
2. American Association on Mental Retardation (2001). Guidelines on Professional Conduct [Online]:www.aamr.org/Policies/guidelines.shtml
3. American Psychological Association (1994). Resolution on facilitated communication by the American Psychological Association. In J.W. Jacobson & J.A. Mulick (Eds) (1996) Manual of Diagnosis and Professional Practice in Mental Retardation (pp. 431-433). Washington, DC:American Psychological Association.
4. Annas, G.J. & Grodin, M.A. (1989). The Nazi Doctors and the Nuremberg Code. New York: Oxford University Press.
5. Arscott, K., Dagnan, D. & Kroese, B.S. (1998). Consent to psychological research by people with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 11, 77-83.
6. Balandin, S. (2003). Happily ever after: communicating results to participants in research. Journal of Intellectual and Developmental Disability, 28, 85-87.
7. Balandin, S. & Morgan, J. (1997). Adults with cerebral palsy: what's happening? Journal of Intellectual and Developmental Disability, 22, 109-124.
8. Balandin, S. & Raghavendra, P. (1999). Challenging oppression: augmented communicators' involvement in AAC research. In F. Loncker, J. Clibbens & L. Lloyd (Eds) Augmentative and Alternative Communication: New Directions in Research and Practice (pp. 262-277). London: Whurr.
9. Brigham, L. (1998). Representing the lives of women with learning difficulties: ethical dilemmas in the research process. British Journal of Learning Disabilities, 26, 146-150.
10. Chappell, A.L. (2000). Emergence of participatory methodology in learning difficulty research:understanding the context. British Journal of Learning Disabilities, 28, 38-43.
11. Clegg, J. (1999). Ethics and intellectual disability. Current Opinion in Psychiatry, 12, 537-541.
12. Clegg, J. (2000). Beyond ethical individualism. Journal of Intellectual Disability Research, 44, 1-11.
13. Clements, J., Rapley, M. & Cummins, R.A. (1999). On, to, for, with- vulnerable people and practices of the research community. Behavioural and Cognitive Psychotherapy, 27, 103-115.
14. Dresser, R. (1996). Research involving persons with mental disabilities. In D. Evans & M. Evans (1996) A Decent Proposal: Ethical Review of Clinical Research. Chichester: Wiley.
15. Duchan, J.F. (1999). Views of facilitated communication: what's the point? Language, Speech, and Hearing Services in Schools, 30, 401-408.
16. Duchan, J.F., Calculator, S., Sonnenmeier, R., Diehl, S. & Cumley, G.D. (2001). A framework for managing controversial practices. Language, Speech, and Hearing Services in Schools, 32, 133-141.
17. Fraser,W.I. (1999). Ethical and evidential issues in mental retardation. Current Opinion in Psychiatry, 12, 535-536.
18. Freedman, R.I. (2001). Ethical challenges in the conduct of research involving persons with mental retardation. Mental Retardation, 39, 130-141.
19. Frew, R. (2001). Research ethics committees: what can we learn from the Western European and United States experience? Monash Bioethics Review, 20, 61-77.
20. Grodin, M.A. & Glantz, L.H. (Eds) (1994). Children as Research Subjects: Science, Ethics and Law. Oxford: Oxford University Press.
21. Guyatt, G. (1996). Clinical care and clinical research: a false dichotomy. In J. Daly (Ed.) Ethical Intersections: Health Research, Methods and Researcher Responsibility (pp. 66-73). Sydney:Allen & Unwin.
22. Heller, T., Pederson, E.L. & Miller, A.B. (1996). Guidelines from the consumer: improving consumer involvement in research and training for persons with mental retardation. Mental Retardation, 34, 141-148.
23. Iacono, T. & Murray, V. (2003). Issues of informed consent in conducting medical research involving people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 16, 41-52.
24. Kellehear, A. (1993). The Unobtrusive Researcher: A Guide to Methods. Sydney: Allen & Unwin.
25. Kellehear, A. (1996). Unobtrusive methods in delicate situations. In J. Daly (Ed.) Ethical Intersections:Health Research, Methods and Researcher Responsibility (pp. 97-105). Sydney: Allen & Unwin.
26. Kellett, M. & Nind, M. (2001). Ethics in quasi-experimental research on people with severe learning disabilities: dilemmas and compromises. British Journal of Learning Disabilities, 29, 51-55.
27. Kvale, S. (1996). Interviews: An Introduction to Qualitative Research Interviewing. London: Sage.
28. McCarthy, M. (1998). Interviewing people with learning disabilities about sensitive topics: a discussion of ethical issues. British Journal of Learning Disabilities, 26, 140-145.
29. McDonald, I. (1996). Clinicians studying their own practice: an introduction. In J. Daly (Ed.) Ethical Intersections: Health Research, Methods and Researcher Responsibility (pp. 193-202). Sydney:Allen & Unwin.
30. McNeil, P.M. (1996). Research ethics committees: is the tail wagging the dog? In J. Daly (Ed.) Ethical Intersections: Health Research, Methods and Researcher Responsibility (pp. 15-23). Sydney:Allen & Unwin.
31. Miles, M.B. & Huberman, A.M. (1994). Qualitative Data Analysis (2nd edn). Thousand Oaks, CA:Sage.
32. Milgram, S. (1974). Obedience to Authority. New York: Harper & Row.
33. National Commission for the Protection of Human Subjects of Biomedical and Behavioural Research (1978). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Department of Health, Education andWelfare Publication No. (OS) 78-0012. Washington, DC: US Government Printing Office.
34. National Health and Medical Research Council (1995). Ethical Aspects of Qualitative Methods in Health Research: An Information Paper of Institutional Ethics Committees. Canberra: Australian Government Publishing Service.
35. National Health and Medical Research Council (1999). National Statement on Ethical Conduct in Research Involving Humans. Canberra: AusInfo.
36. Nolan, T. (1996). Traditional scientific designs and ethics. In J. Daly (Ed.) Ethical Intersections:Health Research, Methods and Researcher Responsibility (pp. 58-65). Sydney: Allen & Unwin.
37. Portney, L.G. & Watkins, M.P. (2000). Foundations of Clinical Research: Applications to Practice. (2nd edn). Upper Saddle River, NJ: Prentice-Hall.
38. Roberts, L.W. & Roberts, B. (1999). Psychiatric research ethics: an overview of evolving guidelines and current ethical dilemmas in the study of mental illness. Biological Psychiatry, 46, 1025-1038.
39. Royall, R.M. (1991). Ethics and statistics in randomised clinical trials. Statistical Science, 6, 52-88.
40. Sergejew, A. (1996, September). The research ethics process: an overview and tips for applicants. Paper presented at Research Ethics Seminars, Deakin University, Geelong, Australia [Online]:http://ecco.bsee.swin.edu.au/studes/ethics/ethics-tips.html.
41. Stalker, K. (1998). Some ethical and methodological issues in research with people with learning difficulties. Disability and Society, 13, 5-19.
42. Stalker, K. & Harris, P. (1998). The exercise of choice by adults with intellectual disabilities: a literature review. Journal of Applied Research in Intellectual Disabilities, 11, 60-76.
43. Swain, J., Heyman, B. & Gillman, M. (1998). Public research, private concerns: ethical issues in the use of open-ended interviews with people who have learning difficulties. Disability and Society, 13, 21-36.
44. Ward, K. & Trigler, J.S. (2001). Reflections on participatory action research with people who have developmental disabilities. Mental Retardation, 39, 57-59.
45. World Health Organisation (2001). International Classification of Functioning and Disability and Health: ICF. Geneva: Author.
46. World Medical Association. (1989). TheWorld Medical Association Declaration of Helsinki: Recommendations Guiding Medical Doctors in Biomedical Research InvolvingHumanSubjects [Online]:http://ecco.bsee.swin.edu.au/studes/ethics/Helsinki.html.
47. Wyn, J., Lumley, J. & Daly, J. (1996). Women's health: methods and ethics. In J. Daly (Ed.) Ethical Intersections: Health Research, Methods and Researcher Responsibility (pp. 166-179). Sydney:Allen & Unwin.
48. Zhan, S. & Ottenbacher, K.J. (2001). Single subject research designs for disability research. Disability and Rehabilitation, 23, 1-8.