Ethical challenges and complexities of including people with intellectual disability as participants in research

Journal of Intellectual and Developmental Disability

Volumn 31, Issue 3, 2006, Pages 173-179

  Iacono, Teresa ^a,b  

^a MONASH UNIVERSITY   (Australia)

^b Centre for Developmental Disability Health Victoria   (Australia)

Author keywords

Informed consent; Intellectual disability; Research ethics

Indexed keywords

DECISION MAKING; HUMAN; INFORMED CONSENT; INTELLECTUAL IMPAIRMENT; MEDICAL RESEARCH; MEDICAL SOCIETY; PRACTICE GUIDELINE; PROFESSIONAL STANDARD; RESEARCH ETHICS; REVIEW;

ETHICS COMMITTEES, RESEARCH; ETHICS, RESEARCH; GUIDELINES; GUIDELINES AS TOPIC; HUMANS; INFORMED CONSENT; MENTALLY DISABLED PERSONS; RESEARCH SUBJECTS; VICTORIA;

EID: 33748482007     PISSN: 13668250     EISSN: 14699532     Source Type: Journal    
DOI: 10.1080/13668250600876392     Document Type: Review

References (18)

1. Allen, G., & Courchesne, E. (2003). Differential effects of developmental cerebellar abnormality on cognitive and motor functions in the cerebellum: An fMRI study of autism, American Journal of Psychiatry, 160, 262-273.
2. Bach, M., & Rock, M. (1996). Seeking consent to participate in research from people whose ability to make an informed decision could be questioned: The supported decision-making model. Ontario: The Roeher Institute.
3. Balandin, S. (2003). Happily ever after: Communicating results to participants in research. Journal of Intellectual & Developmental Disability, 28, 87-89.
4. Beecher, H. (1966). Ethics and clinical research. New England Journal of Medicine, 274, 1354-1360.
5. Clements, J., Rapley, M., & Cummins, R. (1999). On, to, for, with - vulnerable people and the practices of the research community. Behavioural and Cognitive Psychotherapy, 27, 103-115.
6. Dalton, A. J., & McVilly, K. R. (2004). Ethics guidelines for international, multicenter research involving people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, 1, 57-70.
7. Fisher, C. (2002). A goodness-of-fit ethic of informed consent. Fordham Urban Law Journal, 30, 159-171.
8. Griffin, T., & Balandin, S. (2004). Ethical research involving people with intellectual disabilities. In E. Emerson, C. Hatton, T. Thompson, & T. R. Parmenter (Eds.), The international handbook of applied research in intellectual disabilities (pp. 61-82). Chichester, UK: John Wiley & Sons.
9. 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, 41-51.
10. Monash University Standing Committee on Ethics in Research Involving Humans. (2004). Application for ethics approval for research involving humans guidelines. Available at: http://www. monash.edu.au/research/ethics /human/researchers/v3-form1 guidelines-2004.doc (accessed 30 November 2005).
11. National Health and Medical Research Council (NHMRC). (1999). National statement on ethical conduct in research involving humans. Canberra: NHMRC.
12. National Health and Medical Research Council (NHMRC). (2001). Intellectual or mental impairment, consent and consent for incompetent adults. In Human research ethics handbook. Available at: http://www7.health.gov.au/ nhmrc/publications/hrecbook/03_law/15.htm (accessed 22 August 2005).
13. National Health and Medical Research Council (NHMRC). (2004). Review of the national statement on ethical conduct in research involving humans: First consultation draft (December 2004). Available at: http://www.nhmrc.gov.au/ publications/_files/nsec.pdf (accessed 22 November 2005).
14. National Health and Medical Research Council and Consumers' Health Forum of Australia. (2001). Statement on consumer and community participation in health and medical research (December 2001). Available at: http://www.nhmrc.gov. au/publications/synopses/r22syn.htm (accessed 20 October 2004).
15. Office of the Health Services Commissioner. (2002). Statutory guidelines on research [Health Records Act 2001 (Vic)]. Melbourne: Author.
16. Pettit, P. (1992). Instituting a research ethic: Chilling and cautionary tales. Bioethics, 6, 89-112.
17. World Medical Association. (2004). World Medical Association Declaration of Helsinki: Ethical principles for medical research involving human subjects. Available at: http://www.wma.net/e/policy/pdf/17c.pdf (accessed 22 November 2005).
18. Victorian State Government. (1986). Guardianship and Administration Act (version no. 050). Melbourne: Author.