Abstract Text Background: Citizens historically disenfranchised from health care advances seek a means of making their voices heard in public health policy. Over the last three years the National Human Genome Research Institute (NHGRI) - Ethical, Legal, and Social Implications (ELSI) Program has funded a study engaging citizens in deliberation on genetics issues, using quantitative surveys in program assessment and assurance. Methods: Structured questionnaires were used to assess demographic characteristics of participants and their reactions to the facilitator, group interaction, and policy options at several time points. Results: Considerable success was achieved in recruiting members from diverse racial-ethnic and socio-economic backgrounds through the use of community-based organizations. The groups differed in their satisfaction with educational materials and the process of group interaction, with recruitment policies, participant socio-economic characteristics, and facilitator style as possible factors influencing the evaluations. Desire to be heard, individual autonomy and privacy in genetic testing were consistently expressed preferences. Survey results suggest a need for attention to language and cultural sensitivity in the design and monitoring of sessions. Conclusions: Structured questionnaires offer an efficient means of gaining information about a range of demographic and psychosocial variables in discussion groups. Such questionnaires make explicit changes participants want to see in the conduct of study sessions and the impact they have on genetics policy.
Learning Objectives: 1. Identify the purposes behind and advantages of using quantitative surveys to evaluate process in focus groups and community dialogues. 2. Evaluate focus group and community dialogue methodologies.
Keywords: Genetics, Community Research
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.