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II Exemplifying Cross-European Technology Assessment

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The Future Panel on Public Health Genomics – Lessons Learned and Future Perspectives

Andrй Krom, Mara Almeida, Leo Hennen, Edgaras Leichteris, Arnold Sauter and Dirk Stemerding

Abstract: Krom et al. give an in-depth account of a methodological experiment carried out in the PACITA project, namely the application in a cross-European context of the Future Panel method. Focusing on the complex issue of genomics and

its potential use in public health care, parliamentarians from different countries were gathered to learn about and debate this far-reaching field of research in order to create a foundation for proactive policy formulation. The authors analyse and evaluate the project setup and argue that while further development and institutional is necessary to make similar future projects reach their full potential, the project nevertheless exemplifies the practicability and value of applying previously nationally contained TA methods in a cross-European setting.

Klьver, Lars, Rasmus Шjvind Nielsen, and Marie Louise Jшrgensen, eds. Policy-Oriented Technology Assessment Across Europe: Expanding Capacities. Basingstoke: Palgrave Macmillan, 2016. doi: 10.1057/9781137561725.0016.

Technology constantly pushes the bounds of what medical care can achieve and at what cost. Although medical care is a highly expert-driven field, parliamentarians and government decision makers nevertheless become involved in shaping medical innovation through funding decisions and framework regulations. If such interventions are to be both legitimate and effective, they must be made on the basis both of sound evidence and of open dialogue regarding possible pathways. Designing processes to ensure such quality in policy making is a key example of the role that technology assessment (TA) institutions can play as mediators between science and policy. To exemplify this role to European policy makers, PACITA carried out an experiment in cross-national policy dialogue on Public Health Genomics (PHG).

PHG is often understood as the responsible and effective translation of genome-based information and technologies (GBITs) into health-care practices. It is regarded as a central future perspective for the medical system. According to some experts, PHG will make health care truly personalized, predictive, preventive and participatory. However, there is still a high degree of scientific uncertainty about what PHG can actually deliver. There are also far-reaching ethical, legal and socioeconomic questions related to GBITs. Therefore, an in-depth societal and political debate on PHG is of fundamental importance for the future health-care system.

TA has already played an important role in the public and political discourse in many countries, by systematically collecting interand trans-disciplinary knowledge and by stimulating and organizing debate between different stakeholders. Given the rapid scientific progress and many challenges for policy making in the foreseeable future connected to PHG, an expert-based methodology – the Future Panel – was chosen. The central idea behind the Future Panel method is to connect the scientific and the political discourse in a new and constructive way. In general, the method is well suited to far-reaching topics that require central political initiatives and action and where there is a desire to act proactively. The method had originally been developed and applied in a national context. In this project, the Future Panel (FP) was formed by parliamentarians from different European member states and the European Parliament with a specific responsibility for health policy. This was a methodological experiment because the FP method had to be adapted to a cross-national context.

As an example project, the FP on PHG succeeded in contributing to the central aim of PACITA – to induce mutual learning on setting up support platforms for knowledge-based decision making among the European countries involved. The project also managed to provide relevant input for policies on Public Health Genomics in terms of an overview of state of affairs and policy options. Developments in PHG hold the promise to be beneficial for individuals and to promote public health. However, given a range of uncertainties and ambiguities related to GBITs, the responsible introduction of GBITs in health-care systems requires an incremental approach.

As a methodological experiment, the project did not meet all of its objectives, including the aim to connect the scientific and political discourse on Public Health Genomics in a new and constructive way. Due to the complexity of the topic and the specific restriction of time and resources, detailed discussions of options for policy intervention and regulation of existing practices and regulatory stipulations for different fields of application were not possible. Through its broad approach, however, the project and its documented outcomes are useful to raise sensitivities for problems to be expected and thus can serve as a starting point for a more detailed evaluation of single GBIT applications and health-care practices on the European level and the national level.

Background

The aims of the demonstration project were to provide a concrete and policy-relevant example on EU-level coordinated parliamentary TA by:

� giving input to policy making on policies on Public Health Genomics, in terms of an overview of state of affairs and policy options; [1]

� establishing a national/regional-level and EU-level experience

with a coordinated expert-based TA method that involves

parliamentarians;

� doing this in cooperation with decision makers on the national/

regional level and the EU-level, in order to create experience on,

and thereby mobilization around, the use of such methods among

the main users;

� doing this in cooperation with the scientific community on Public

Health Genomics in order to create learning and mobilization

on the potential of expert-based policy making facilitated by TA

specialists; and

� involving countries that have not established such institutions and

methods directly in their work, in order to build capacity, create

learning and mobilize the actors.

The idea of installing a panel of parliamentarians to discuss long-term political issues related to developments in science and technology was not new. An example of an earlier and comparable initiative is the Finish Committee for the Future. Based on parliamentary proposals going back to 1986, a Committee for the Future was appointed in 1993 on a temporary basis. In the year 2000, the Committee received permanent status.

[2] Building on the Finish experience, the Danish Board of Technology developed the Future Panel method. This method involves a temporary panel, typically for a period of 1½–2 years, the activities of which revolve around intensive collaboration between the Future Panel and invited experts from relevant practices related to the topic at hand.

Like the Danish Future Panel method, the PACITA Future Panel involved a temporary panel of parliamentarians and the collaboration of the Future Panel and invited experts. Important differences were that the project on Public Health Genomics involved a cross-national Future Panel, that the interaction between the Future Panel and the invited experts was less extensive and that there was no institutional link between the project and the respective parliaments of the FP members: they were invited as individual members of parliament. This meant that the method had to be adapted for use in a cross-national context. In a sense, then, the 'Future Panel on Public Health Genomics' was a methodological experiment.

  • [1] These were the aims of the project as specified beforehand (the 'theory'). At several points, there were (small) differences between theory and practice. See A. Krom and D. Stemerding (2014).
  • [2] See web.eduskunta.fi/Resource.phx/parliament/committees/future.

    htx?lng=en.

 
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