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Public Consultation and Organizational Translation; Notes from Interdisciplinary Working

Masson, K   Haddow, G   Cunningham-Burley, S

March 2012

Innogen working paper no. 98

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Abstract

The Generation Scotland (GS): Scottish Family Health Study (GS: SFHS) is an interdisciplinary and multi-institutional programme which aims to investigate the genetic basis of common complex diseases that affect the Scottish population. The study concentrates particularly on health problems that are thought to be passed down through familial generations. It is a large scale, longitudinal, and multi-methodological framework of research that attempts to identify the genetic factors of disease. Alongside the scientific endeavour, a public consultation was carried using a combination of qualitative, deliberative and representative survey methods in order to establish and include the views of a wide-range of publics about issues around procuring, storing, accessing and sharing the DNA and information for health related research. Furthermore, in order to assess how the results from the consultations were responded to by the GS organization, several periods of non-participant observation (NPO) were conducted at meetings that discussed the findings. In this article, we discuss, in particular, the findings from the early deliberative forums about the GS participant information leaflets and consent forms, developed for one of the projects under the GS umbrella, the GS Scottish Family Health Study (GS:SFHS). We then outline a workshop that brought together individuals from different levels and disciplines and professional groups involved in GS:SFHS. The participant observation of this event demonstrates that translating the results from the public consultation to organizers who come from a range of backgrounds raises questions about how public consultations and interdisciplinary relationships are managed and about whether, how and when the results of public consultation should link to programme decision making. We show that factors may include the ease by which the results can be incorporated; the benefits to the organisation for doing so, and whether the organisation can incorporate the findings without jeopardising the project as a whole are all relevant to this process. Finally, this article identifies reflexivity both at the level of the individual and of professional/disciplinary groups during the organizational development of a project such as SFHS. It does so by tracing the journey taken by the project members as they negotiate with each other the findings of the public consultations during what were the early stages of the development of GS:SFHS.