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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