Dear all
I've been reading extensively in the area of the ethics of research
involving people with disabilities (particularly intellectual
disabilities - learning disabilities for the UK mob!). Just thought I
would share a list of the better references for people interested in
further reading (sorry Alex, I didn't reply immediately as I assumed you
would not be able to do this reading in the 4 hours you had!).
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(1), 77-83.
Brown, H., & Thompson, D. (1997). The ethics of research with men who
have learning disabilities and abusive sexual behaviour: A minefield in
a vacuum. Disability & Society, 12(5), 695-707.
Clear, M., & Horsfall, D. (1997). Research and disability in a local
community. Disability and Society, 12(1), 119-132.
Kitchin, R. (2000). The researched opinions on research: Disabled
people and disability research. Disability and Society, 15(1), 25-47.
Knox, M., Mok, M., & Parmenter, T. R. (2000). Working with the experts:
Collaborative research with people with an intellectual disability.
Disability and Society, 15(1), 49-61.
Lloyd, M., Preston-Shoot, M., Temple, B., & Wuu, R. (1996). Whose
project is it anyway?: Sharing and shaping the research and development
agenda. Disability and Society, 11(3), 301-315.
Mark, B., Geddes, N., Salyer, J., & Smith, C. (2000). Managing the
informed consent process in large multicenter projects. Nursing
Research, 48(2), 114-117.
Milliken, A. D. (1993). The need for research and ethical safeguards in
special populations. Canadian Journal of Psychiatry, 38(10), 681-685.
Moorhouse, A., & Weisstub, D. N. (1996). Advance directives for
research: Ethical problems and responses. International Journal of Law &
Psychiatry, 19(2), 107-141.
Oliver, M. (1992). Changing the social relations of research
production? Disability, Handicap and Society, 7(2), 101-114.
Rodgers, J. (1999). Trying to get it right: Undertaking research
involving people with learning difficulties. Disability and Society,
14(4), 421-433.
Sample, P. L. (1996). Beginnings: Participatory action research and
adults with developmental disabilities. Disability and Society, 11(3),
317-332.
Shakespeare, T. (1996). Rules of engagement: Doing disability research.
Disability and Society, 11(1), 115-119.
Siegel, P. S., & Ellis, N. R. (1985). Note on the recruitment of
subjects for mental retardation research. American Journal of Mental
Deficiency, 89(4), 431-433.
Stalker, K. (1998). Some ethical and methodological issues in research
with people with learning difficulties. Disability and Society, 13(1),
5-19.
Swain, J., Heyman, B., & Gilman, 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(1), 21-36.
Wettstein, R. M. (1995). Research ethics and human subject issues. In
H. A. Pincus (Ed.), Research funding and resource manual: Mental health
and addictive disorders (pp. 423-437). Washington, DC, USA: American
Psychiatric Association.
The Stalker article is a particularly good one. I am sure there are many
more good articles on the topic that I have missed, but these ones I
have found to be very useful and interesting. Happy reading!!
Cheers
Vanessa Murray
Research Assistant
Centre for Developmental Disability Health Victoria
Australia
Lesley Chenoweth wrote:
>
> Alex your posting resonated with me strongly. Feeling that one has 4
> hours to live before facing the ethics committee is something I can relate
> to!
> I think it is time for some new work on research and ethics. I have found
> that ethics committees are often wedded to particular methodogolical
> approaches and will "judge" proposals on those rather than ethical
> grounds.
> The "newer" approaches (eg narrative methods) require some fresh
> thinking about core principles like consent, confidentiality. I uphold and
> fully support the higher order principles of ethical clearance - We must
> ensure that we do no harm, that we do not exploit people involved in
> research, that people give their informed consent etc.
> Mind you, we have of course plenty of examples of qualitative research
> where disabled people were used to test vaccines, drugs, behavioural
> techniques with often tragic and dire consequences for them. (I wonder
> how they got ethical clearance in those days -1960s and 70s even - or
> didn't they?)
> However, it is my experience in work with people who are labelled as
> having severe and profound intellectual disability and have experienced
> abuse, that their lived experiences are often excluded from the reseach
> agenda on ethical grounds.
> I have had real problems getting clearance for a project in which
> practitioners and others close to disabled people with severe intellectual
> disability, could anonymously send in reports of past abuse they had
> witnessed.
> We have also had some interesting discussion about confidentiality in
> other work where ethical guidelines would say that pseudonyms should
> be used where the research participants (indigenous people in this
> case) have strongly argued that they want their true and real identities
> portrayed - ie real names. The ethical committee won in this case.
> There are some good articles on this topic -
> see for example Disability & Society vol 11 No 1 in 1996 and
> Kirsten Stalker's paper in Disability & Society 13(1) 1998
> I'd be interested in others opinions, experiences on this issue.
>
> Lesley Chenoweth
> Dr Lesley Chenoweth
> Director Post Graduate Coursework Programs
> School of Social Work & Social Policy
> The University of Queensland
> BRISBANE Q. 4072
>
> Phone: +61 7 3365 1252
> Fax: +61 7 3365 1788
> Email: [log in to unmask]
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