Ethical Dilemmas in Participatory Action Research: A Case Study from the Disability Community

This case study explores the use of Participatory Action Research (PAR) by and with a community of people with disabilities in addressing a polarizing issue in that community: death with dignity or physician-assisted suicide legislation. Following a brief review of the debate within the community about this issue and the goals, methods, and findings of this project, the authors examine four key ethical challenges. These are dilemmas in issue selection when the community is deeply divided over a problem area, inclusion and exclusion in study team makeup and sample selection, insider/outsider issues, and how best to use findings in ways that can unite and strengthen the community. The implications of these issues for health educators and others engaged in community-based PAR efforts are presented.

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Meredith Minkler

Pamela Fadem

Martha Perry

Klaus Blum

Leroy Moore

Judith Rogers

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Image by University of California Center for Collaborative Research for an Equitable California