Experts, policy‐makers and citizens: actor constellations and xenotransplantation policies in international comparison
Authors: Griessler Erich 
Published: April 2014

At the turn of the millennium, xenotransplantation was a topic with a high potential for societal dispute. The reasons were possible infection risks, necessary measures of risk management and surveillance, associated constraints of human rights as well as a number of various other ethical concerns. This situation prompted discussions about the governance of xenotransplantation on a national and international level. This paper compares international xenotransplantation policies and investigates patterns of policy‐making as well as the different role of experts, policy‐makers and the public therein.

Although it might be assumed that xenotransplantation was discussed globally in the same way, international comparison shows cultural contingency. First, although international organizations identified xenotransplantation as a global problem requiring broad public discussion, the intensity of public debates varied strongly among countries. Second, the topical framing of xenotransplantation differed between countries. Nevertheless, the problems of infection risk and organ shortage often dominated, whereas ethics and animal welfare issues were marginalized. Finally, xenotransplantation polices varied. In most cases regulation meant the decision to provide a legal framework to continue research, some countries took a wait and see position, and a minority opted for a legal or de‐facto moratorium.

When comparing ways of policy‐making, it is possible to discern different types of decision‐making, i.e. bureaucratic, bureaucratic‐technocratic, parliamentarian‐political and participatory.

The bureaucratic type was elitist and closed; it limited decision‐making to the civil service and handpicked internal experts. The bureaucratic‐technocratic type was a bit more inclusive, but still, the role of the civil service was particularly strong. In addition, external experts – typically natural scientists and physicians, sometimes ethicists – were involved in advisory bodies. In a few cases, stakeholders and NGOs were also included to some degree. The parliamentarian‐political type also included elected politicians in decision‐making. Stakeholders and NGOs were only included as informants. The participatory type involved a very broad range of actors, i.e. civil servants, experts, elected politicians, NGOs, technology assessment organisations, and the general public.

Different types of policy‐making used diverse approaches towards technology assessment (TA). Whereas in bureaucratic policy‐making no formal TA processes were launched, the bureaucratic‐technocratic type relied on expert TA. In the parliamentarian‐political type, expert TA was complemented by the involvement of elected politicians. In the participatory approach, TA andparticipatory technology assessment (pTA) were used and attempts were made to link participation to politics.

The bureaucratic type of policy‐making process was informed by workshops and conferences organized by international organizations, in which civil servants participated. In the bureaucratic‐technocratic type, a broader range of information was used, stemming from experts or international organizations and early movers in xenotransplantation regulation. In the parliamentarian‐political approach, in addition, stakeholders and NGOs provided information. Again, the participatory type used the broadest range of information, including international organizations, scientists, NGOs, and citizens.

The different types of policy‐making involved the general public quite differently. The bureaucratic type neither involved, nor informed, the public. Similarly, the bureaucratic‐technocratic approach involved the public only to a small degree. Citizens were included via survey research and information about results via the Internet. Also, the parliamentarian‐political approach applied survey research and information; in one country, citizen involvement also meant consultation of selected actors. The participatory type used a range of activities to involve the public (e.g. citizen juries, consensus conferences, online debates, public discussion, theater plays). In Switzerland, several mechanisms of direct and representative democracy were utilized to initiate a debate.

The four approaches also differed in respect of accountability and openness. The bureaucratic, the bureaucratic‐technocratic, and the parliamentarian‐political approach had problems in one way or another and to different degrees regarding openness and accountability of recruitment, agenda setting, openness to the public, conflict of interest, and methods applied. The participatory approach, on the other hand, was open to the public, often gave ordinary citizens an opportunity to set an agenda, often recruited experts and citizens based on open call for tenders and explicit criteria, and used a broad variety of participatory methods.

In summary, comparison shows that in most cases the decision was taken to continue xenotransplantation research in principle. Most often processes of decision‐making were bureaucratic‐technocratic and – despite the rhetoric of public participation – rarely involved citizens. The processes were only open and accountable to a small degree and framed xenotransplantation rather narrowly in terms of organ shortage and risk. Thereafter, expert bodies rather quickly turned their focus on the concrete details of risk regulation and management.

Reference

[1] Griessler E, Biegelbauer P, Hansen J, Loeber A, 2012 Citizen participation in decision‐making on complex and sensitive issues. Experiences with xenotransplantation. Report of the project “Impact of Citizen Participation on decision‐making in a knowledge intensive policy field (‘CIT‐PART). http://www.cit-part.at/CIT%20PART%202.Edition.pdf, 2.9.2013.