An overview of the role of society and risk in xenotransplantation.

BACKGROUND: Over time, the notion of public has evolved. While the concept of public was initially conceived of as a single undifferentiated entity, the common understanding is now that a variety of differentiated, multifaceted and multiple public(s) can be constructed for different purposes. This is equally true in xenotransplantation; the literature shows how different kind of publics can be introduced as relevant. The paper explores the notion of public and the contemporary participatory procedures as participatory rights for citizens in decisions concerning technoscience and society. Its perspective, thus, is normative; namely, it aims at understanding how the political role of citizens is changing in democratic societies where matters of innovation are concerned. It is focused on xenotransplantation whose connections with public discourse and practices are quite paradigmatic among new emerging biomedical technologies, due to its peculiar risks.

METHODS AND RESULTS: The paper reviews the historical background of risk communication and public involvement in science-based decision-making and provides an overview of the current roles and meanings of deliberative procedures in xenotransplantation. After a short discussion of the history of the social implementation of xenotransplantation, the construction of the different publics dealing with this biomedical technology is briefly analysed. Publics have been firstly conceived of as objects of research, which has looked at them to quantify people's positive and negative attitudes towards xenotransplantation. Further developments have led to the notion of the public as composed of citizens, empowered as subjects of decisions. In both Canadian and Australian consultations, citizens were engaged in a complex learning process aimed at committing them to a decision. Despite the fact both public consultations represented important forms of experimental democracy, they were still focused on seeking consensus and assessing compliance from citizens. New Zealand is the most recent example of public consultation in xenotransplantation. Likewise, several public consultations have recently been launched by the European Commission on Advanced Therapies. Unlike in the Canadian and Australian cases, the latter initiatives aimed to reach only certain parts of the population, and the overall consultations were prepared to seek approval.

CONCLUSIONS: Several categories of individuals may be interesting and interested publics in xenotransplantation. This is a field in which the importance of the potential risks that xenotransplants pose to society has been widely discussed. The point is that publics should not only be educated about the risk but should be given an opportunity to participate actively in the decision about whether and under what conditions they are exposed to the risk. Likewise, the boundaries between surveys, consultations and collection of advice may be blurred in actual practices. The hope remains that all different instruments either to collect or disseminate knowledge, and to explore new tools of governance may help connect science and policy to society in deeper and more complex ways. The next step points to a different meaning of public participation. It is shifting from participation as mere consensus and risk acceptance, to public engagement as a form of shared responsibility for risk control and regulatory decision-making.