“What Do You Think about Genetic Medicine?” Facilitating Sociable Public Discourse on Developments in the New Genetics

Abstract

An important aspect of any meaningful public discussion about developments in gene technology is the provision of opportunities for interested publics to engage in sociable public discourse with other lay people and with experts. This article reports on a series of peer group conversations conducted in late 1996 and early 1997 with sixteen community groups in Perth, Western Australia, interested in gene therapy technology. With the case of cystic fibrosis as a particular focus, and using background resource material as a stimulus for discussion, the participating groups explored a range of value issues arising from the new genetic medicine. This more discursive context enabled participants to express a number of background or life-world concerns about genetic medicine, concerns that are often obscured by the dominant biomedical and bioethical discourses.

Public culture and public understanding of genetics: a focus group study

“…In fact, research into the public's understanding of genetic technology has already begun this discussion. A growing body of research indicates that members of the public are very good at bringing their personal frames of reference to bear on their understanding of genetic science (Barns et al, 2000;Cunningham-Burley and Kerr, 1999;Davison et al, 1997;Kerr et al, 1998aKerr et al, , 1998bLambert and Rose, 1996;Michael, 1992;Morris and Adley, 2001;Parsons and Atkinson, 1992;Stockdale, 1999;Wynne, 1995). Research with these publics has sought to discover how people transform scientific information into personally meaningful units with which they can make decisions.…”

Informed lay preferences for delivery of racially varied pharmacogenomics

“…Consequently, a reactance format focus group, which provides instruction in basic concepts and scenarios to which lay people can react, provides a superior method for ascertaining public preferences. 19 Focus groups also allow participants to respond to issues with their own preferences, concerns, and language, as opposed to survey research, which requires participants to select from a closed, and usually limited, set of options, which might reflect researcher's worldviews rather than those of participants. Focus group methodology also allows exploration and understanding of reasons for preferences, because participants articulate not only their choices, but also the reasons behind those choices.…”

Public Perception of Prenatal Genetic Testing: Arguments Put forward by the Public during a Participatory Policy Project in the Netherlands

“…Although people’s inputs are not always carefully thought through and well phrased, they do reveal how citizens struggle with complex issues by drawing on a range of background experiences and knowledge and give us some idea of the kinds of moral reasoning employed when dealing with such issues [1]. However, from a methodological point of view this project poses some limitations that have to be addressed.…”

“…In order to enhance its legitimacy and accountability, as well as to forestall social resistance and to ensure public support, new and controversial scientific developments – in biotechnology and genomics for example – have become the topic of public participation initiatives in Europe and the USA [1,2,3]. Public participation mechanisms described in the literature include forms of communication or information, consultation, membership in advisory or decision-making structures and deliberative approaches, all reflecting different degrees of public input and influence [3,4,5,6].…”