This presentation will explore a range of ethical issues that arose in the course of a participatory action research (PAR) study conducted in a disability community with the aim of surfacing attitudes and broadening the dialogue around "death with dignity" legislation. PAR principles were carefully adhered to(e.g., involving community members in all phases of the project), yet many ethical challenges emerged. These included concerns about project focus; inclusion and exclusion in sample selection; the appropriate roles of outsiders (e.g., non-disabled research team members); and how best to utilize findings in ways that both facilitate community empowerment and enable the diverse disabled community to have full participation in the discussion and debate around this contentious public health issue. Efforts to address these challenges, including involvement of participants in decision making about the use of study findings are discussed. Implications for other community based public health projects using participatory action research are described.
Learning Objectives: 1. Describe three PAR principles and how adherence to them can help facilitate high level community participation in research efforts. 2. Identify three ethical dilemmas that arose in the "death with dignity: study and discuss how they were addressed. 3. Describe two implications for the effective use of PAR in other CBPH studies involving controversial topic areas.
Keywords: Community Collaboration, Research Ethics
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
Disclosure not received
Relationship: Not Received.