Genomics and Society: Reinventing Life? - Research Translation: Public Health & Public Engagement

Public engagement is not only in vogue but very often a requirement for securing funding for scientific and social scientific research now that it is recognised that participatory democracy is increasingly valued within the policy arena – especially around areas of scientific controversy. In this session, social scientists present their experiences and perspectives of involvement in public engagement with science, and raise questions about the role of social science/scientists in such projects and activities.

The cultural turn to complexity suggests that scientific activity creates risks and uncertainties. This has altered the relationship between science and society. Scientists now consult the public about the management of uncertainties and their global and temporal consequences. The role of social scientists is to somehow facilitate this relationship. The problem is that because scientists want to recruit public support they often reduce complexity to appear in control of what they are doing, while publics are expected to accept their simplified and promissory explanations as a baseline for consultation. Using recent developments in psychiatric genetics as a case study, I will argue that social scientists occupy an awkward position: for those of us who have to collaborate with scientists, our role is neither that of debunking nor endorsing the science, but anticipating the consequences of excluding complexity from public knowledge. In the case of genetic testing and the growth of personalized medicine, the reduction of complexity raises serious issues about clinical responsibility and the individual management of risk.

How do you get citizens to talk about genomics, and how do you get scientists to listen to them? That is the question that led the Dutch Centre for Society and Genomics (CSG) to start up The DNA-Dialogues as a pilot communication project in 2006. The DNA-Dialogues have been developed as part of the larger research and communication programme of the CSG. That programme aims to set a societal agenda for genomics, which may include agendas for research, policy or public debate. In The DNA-Dialogues we wanted to address, articulate and enrol societal issues connected to genomics science and technology. By ‘societal issues’ we do not mean questions by genomics researchers involving public perceptions or attitudes, but issues that citizens would like to be addressed by genomics experts, whether in science or in policy. That is why we organized The DNA-Dialogues in public settings like existing online forums and why we invited experts to take part in discussions in such settings.

As part of the pilot study we organized three online discussions with citizens and scientists on different topics and in collaboration with different (online) media. In this paper we discuss how organizing and moderating online discussions evolved into ‘doing dialogue’ as a form of social science research. Our experiences with two phenomena in particular gave occasion to this turn: the role played by experts in the discussion, and our own role as organizer and moderator. We conclude that societal agenda-setting is not merely about public engagement, but also requires expert engagement and interventionist research.

The recent vogue for public engagement around science marks a significant shift in the relations between science and the wider society. Scientists can no longer presume that their activities will automatically receive public approval or assent. Instead, they must actively pursue public support, by engaging directly with the public. This has created a space for social scientists, among others, to act as facilitators in the work of public engagement. But there remains a presumption on the part of many scientists that in adopting this role, social scientists should not just seek to facilitate public engagement, but should also act as advocates of scientists' point of view. Is this presumption justified? And if not, what should social scientists be doing instead? How should we think about the politics of public engagement? In particular, can a social scientific understanding of the nature of science and its relations with the rest of society help to illuminate the nature and purpose of public engagement?