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The Future Panel project: process, participants and outcomes

The Future Panel project on Public Health Genomics consisted of three stages. In the first stage, the precise scope of the project was defined during a kick-off meeting that involved the Future Panel, which resulted in a list of policy issues that were identified as most relevant for further investigation. During the second and main stage of the project, which took a full year, policy issues and options for public health genomics were discussed and elaborated in different expert working groups (EWGs) and in a policy options workshop. The final stage was a Policy Hearing in which the Future Panel discussed the main outcomes of the project with invited experts.

The main target group of the project was the Future Panel, consisting of parliamentarians with a specific responsibility for health policy. The panel had four members, who represented different parties in the political spectrum, including one member of the European Parliament and three members of national parliaments (Denmark, Portugal and Switzerland). The main role of the FP was to co-define a research and policy agenda at the start of the project and to discuss, during the final Policy Hearing, the issues and options articulated by a range of experts on different aspects of PHG who were involved in the course of the project.

The project was carried out by a task team of TA practitioners from the four countries involved in the PACITA consortium. [1] As in all subprojects of PACITA, partners were from both countries with and countries without established institutes for (parliamentary) technology assessment (see Table 6.1). A group of five external experts on different aspects of public health genomics was involved as a steering group to assure the high quality of all project activities. Four international expert working groups were responsible for the investigation and articulation of policy issues and options for public health genomics in a year-long process of collaboration with the task team and the expert steering group.

Stage 1: defining an evidence-based policy agenda

As an expert-based methodology, the Future Panel on Public Health Genomics was based on the assumption that policies relating to future developments in this field should be evidence based. 'Evidence' should be taken in a broad sense here: the issues raised by the introduction of genome-based information and technologies in future health care involve not only complex scientific questions but also a history of controversial ethical, social and legal debate concerning highly sensitive areas of medical care, such as prenatal diagnosis and genetic screening. Four international EWGs were composed of experts on precisely these issues. The Future Panel had a pivotal role at the start of the project in identifying the issues that would require further research, deliberation and political action: to ensure the political relevance of the expert-based analysis and policy options to be deliberated in the final policy hearing. During the kick-off meeting of the project, these issues were defined in a discussion with the steering group and task team, resulting in a research and policy agenda that raised questions that could serve as input for the ensuing investigations in the four expert working groups.

  • [1] Not long after the start of the project work package (WP), leader IST (Institute Society and Technology) from Belgium was discontinued. The Rathenau Instituut, not previously involved in this WP, took over the role of WP leader.
 
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