Genetic medicine: an experiment in community-expert interaction.

Abstract

This project tested a two-way model of communication between lay groups and experts about genetic medicine in Perth, Western Australia. Focus group discussion with community group participants was followed by a communication workshop between community group participants and experts. Four groups of concerns or themes emergedfrom discussion: clinical considerations; legislative concerns; research priorities, and ethical and wider considerations. Community group concerns are not always met by the actions of "experts". This is, in part, because of the differing life-worlds of each group. However, the communication workshop showed the potential of two-way communication for both lay and expert members in understanding the others'viewpoint. Further, the approach developed here offers one possible way for community groups to participate in a substantial way in policy formulation processes.

Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach

“…10,81,[84][85][86] Consultations in such circumstances (Type F) appeared less successful in these terms, although well established, politically aware groups that managed to sustain public debate did influence research agendas. 10,50,95 We found isolated examples of consumers influencing research agendas through their use of emotive language addressed to researchers or publishing in the research media. 96 However, independent consumer action more often attracted criticism and bad publicity for services or research.…”

“…We found face-to-face interactions between consumers and research programmes that have included focus groups, 32 interviews, 50 and seminars. 51 For each episode, either single face-toface events were supplemented by other information or communication before or afterwards 32,37,51 or more than one face-to-face consultation was involved.…”

“…50 Rather than recording consumer views or priorities, the authors recorded consumers' questions that they needed answers to in order to formulate their views or priorities. This emphasised the value of deliberative consumer involvement.…”

“…50 Although not convened specifically for the purpose, research priorities were discussed. The authors drew conclusions from the workshop about the nature of consumers' questions and the workshop as a tool for public debate and public policy development.…”

Genetics services in a social, ethical and policy context: a collaboration between consumers and providers: Table 1

“…The voices of users of these services (or "consumers", as many prefer to be called in the United States) are rarely heard, either in codes of practice or codes of ethics. Although consumers have worked with providers on special projects, 1 including producing a model informed consent form for breast cancer genetic testing, 2 and workshops, 3 there has been no comprehensive consumer-provider eVort to describe "best practices" in genetics. Consumers' concerns may diVer from professionals' concerns, and any outline of optimal services should reflect both.…”