Ethical dilemmas in participatory action research: a case study from the disability community.
Participatory action research (PAR) is a collaborative approach to inquiry for education and social change that is gaining increasing prominence in health education. This case study explores the use of 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.
Minkler
Meredith
M
School of Public Health, University of California, Berkeley 94720-7360, USA. mink@uclink4.berkeley.edu
Fadem
Pamela
P
Perry
Martha
M
Blum
Klaus
K
Moore
Leroy
L
Rogers
Judith
J
D003256:Community Participation; D006233:Persons with Disabilities; D004989:Ethics; D005069:Evaluation Studies as Topic; D006266:Health Education; D006302:Health Services Research / Q000379:methods* / Q000592:standards; D006801:Humans; D007407:Interviews as Topic; D019982:Organizational Case Studies; D012107:Research Design / Q000592:standards; D012297:Right to Die; D017236:Suicide, Assisted; D014481:United States