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Stage 2: Exploring the field

With this research and policy agenda as a starting point, the evidence produced by the expert working groups during the second stage of the project covered not only technical state-of-the-art scientific knowledge but also a broad range of other relevant issues raised by developments in the field of public health genomics. The task of the working groups was to produce twenty-page reviews of: (1) the state of human genome research and its prospects for future medical applications in public health genomics; (2) issues of quality assessment relating to the clinical validity and utility of genome-based medical applications and practical experience in public health genomics; (3) the possible economic and structural effects of public health genomics on the public health system; and (4) the ethical, social and legal aspects of public health genomics. In reviewing these different topics, the expert working groups not only engaged themselves with the Future Panel policy agenda in more or less direct ways but also reframed this agenda by putting the issues in a broader context of current and potential future developments and challenges in the field of public health genomics. Based on this review, the role of the EWGs further included the articulation of policy options suggesting different ways in which policy makers might deal with the issues raised by future prospects in public health genomics. [1]

The efforts of the expert working groups were coordinated by the task team members, who also had the responsibility to summarize the four working group reports in an expert paper that described in a concise and accessible way the challenges and policy issues that were identified by the experts as most salient and urgent. [2] The expert paper was the central input for the policy options workshop.

The policy options workshop brought together experts from the four working groups and members of the expert steering group and task team, allowing the project participants to further increase the focus of their main findings and to 'translate' into policy options the rather divergent perspectives on public health genomics represented in the project. The results were integrated in a policy brief that served as the main input for the concluding policy hearing.[3]

table 6.1 Items highlighted in Policy Brief on Public Health Genomics

Issues related to medical genomics research Data sharing and intellectual property 'Big data' security and privacy

Quality assessment

From research to clinical practice

What to screen for and when

Patients' rights and professional responsibilities

Informed consent and service provision

Governance in public health genomics

Need for an incremental and programmatic approach

Stage 3: a new policy agenda?

During the final policy hearing, the Future Panel again played a pivotal role. The hearing was organized as a public meeting in which the Future Panel had the opportunity to discuss with three panels of experts the main items highlighted in the policy brief (see Table 6.1). The aim of the policy hearing was to provide more fine-grained clarifications and suggestions related to the policy questions and issues that were formulated by the FP members at the start of the project. In this way, the FP members would gain a better understanding of the issues involved. Providing information that takes into account the different views on public health genomics would support the FP members in their work in parliament.

  • [1] See Expert Working Groups on Public Health Genomics (2013).
  • [2] See D. Stemerding and A. Krom (eds) (2013).
  • [3] See D. Stemerding and A. Krom (2014).
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