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[e-drug] Ethics of clinical trials in developing countries (2)

E-DRUG: Ethics of clinical trials in developing countries (2)
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Dear Mark and Beverly,

Re:
- Issues associated with consultation and collaboration
- Issues associated with data collection, ownership and access
- Methodological approaches and feasibility in the particular setting
- Strategies for dissemination of findings.

It could well be argued, and I have heard it effectively argued by a number 
of aboriginal communities/leaders here in Canada, that unless the 
"community" is involved in participating in decisions related to the four 
points you identified (for any kind of research including clinical trials) 
the research cannot be considered "ethical".

I work next door to an interesting university-based and community-focused 
organization. It is committed to fostering communication among aboriginal 
communities, researchers and health professionals, increasing research 
partnerships with communities, and providing examples of best research 
practices and outcomes. i.e. ACADRE (Aboriginal capacity and developmental 
research environments partners) http://www.acadre.ualberta.ca/  - Director 
Mary Gibson.

This group recently received a major grant from a national research agency 
and is now producing a low cost and interesting quarterly journal 
(Pimatziwin) with input from researchers, community leaders, and health 
professionals - which discusses such issues.
I am also told have have developed some new ethical frameworks reflecting 
best practices for dealing with research proposals.

Personally, I find it both interesting and ironic that this cultural group 
(Canadian aboriginals) which has the least clout or capacity in our society 
in many ways, is the one standing up for genuine ethical research on behalf 
of all potential research participants. Makes one wonder just who are the 
"developed" and the "developing" groups in our society really are. . .

At the same time, one might also question the practices of research review 
boards in "developed countries". Busy and hurried volunteer research ethics 
boards often have their own unique problems and pressures.  There have been 
a number of articles in the print media in Canada during this past year by 
a National Post reporter, Margaret Munroe. She has uncovered many 
disturbing issues related to sloppy practices by research ethics boards and 
a lack of regulatory oversight related to clinical trials in Canada.

Hope this is helpful.

Wendy Armstrong
Community-University Partnership
For the Study of Children, Youth and Families
University of Alberta
Edmonton, Alberta, Canada

Wendy Armstrong
Edmonton, Alberta
(780) 454-9450
E-mail: wlarmstr@telusplanet.net  

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