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The Future Panel as a TA demonstration project – main achievements and implications

As a TA demonstration project, the Future Panel on Public Health Genomics did quite well. To start with, it successfully contributed to the central aim of PACITA, which is to induce mutual learning in support of the establishment of platforms for knowledge-based decision making among the involved European countries (in this case Germany, Lithuania, Portugal and the Netherlands). One example of this has already been mentioned, namely the fact that at the start of the project none of the task team partners had prior experience with the Future Panel method. Over the course of the project, all partners gained experience not only in actually applying the method but also in adapting the method and applying it in an entirely new context: a clear example of mutual learning. Another example is the fact that the Portuguese partner Instituto de Technologia Quimica e Biologica (ITQB), who got involved in PACITA as a so-called non-PTA country, is now a participant in another TA project that relate to public health genomics, focusing on the 'genetics clinic of the future'.

The project also provided relevant input for policies on public health genomics in terms of an overview of the state of affairs and policy options. It succeeded in involving a broad range of European genomics experts as members of the Working Groups. For instance, interim results of the project have been presented during a satellite meeting of the 2013 conference of the European Society for Human Genetics. [1] Policy makers and practitioners from the countries that were involved were provided with the best available expert knowledge on GBITs and could gain practical experience with TA as a practice of democratic and transparent knowledge-based policy consulting. The complete interactive exercise of Expert Working Groups, Policy Options Workshop and stakeholder consultation support the notion that developments in public health genomics hold the promise to be beneficial for individuals and to promote public health. However, a crucial insight from this process is also that, given a range of uncertainties and ambiguities, the responsible introduction of GBITs in health-care systems requires a careful step-bystep approach that involves a broad societal and political debate about the direction in which health-care systems should develop.

The Future Panel process highlighted two major shifts connected to developments in public health genomics that challenge traditional boundaries in health care. First, the introduction of GBIT in health-care systems challenges the boundary between research and clinical care. It entails complex data flows that raise a number of issues relating to infrastructure demands, intellectual property, data security, tensions between the needs of research and the needs of the individual, patient rights and professional responsibilities, and the potential feedback of (re) analysed data. Second, the introduction of GBIT in health-care systems challenges the boundary between clinical care (particularly diagnostics) and screening. Both diagnostics and screening generate potentially large amounts of information about an individual's genome and raise new and challenging issues concerning quality assessment and how to deal with unsolicited information that might result from these tests. These issues could arise in a variety of health-care settings as whole genome sequencing tests find further application in established and new practices of screening. Consequently, the responsible introduction of GBITs in the health-care system requires an early dialogue in which these stakeholders are actively involved.

The ambition of the project was to deal with the full scope of possible future applications of GBITs, such as pre-implantation and prenatal genetic diagnostics, new-born and adult screening programmes, and whole genome sequencing for general medical services. This broad scope was indispensable for an evidence-based evaluation of the pros and cons. The timespan of the project, however, did not allow for detailed discussions of options for policy intervention and regulation or of existing practices and regulatory stipulations for each of the fields of application. Also, a more in-depth analysis of the state of practice in the different countries involved was not possible. Through its broad approach, however, the project has helped to increase stakeholders' sensitivity to foreseeable problems and thus can serve as a starting point for more detailed evaluations of single applications of GBITs and healthcare practices on the European level as well as on the national level.

  • [1] Why should policy-makers care about public health genomics? Towards a policy agenda' (Paris, 9 June), https://eshg.org/satmeetings2013.0.html.
 
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