Trust, distrust and co-production : the relationship between research, biobanks and donors

This chapter addresses one so-called ethical aspect of biobanking, namely the relationship between biobanks for research and donors of human biological samples and personal health information. Central to bioethical theory and practice is the institution of informed consent and its potential to create trust. We present results from an observational study of the consent process during the recruitment to a local population DNA bank in Southern France as well as subsequent interviews with donors. Three types of donors were identified: (1) Persons holding a “natural trust” and who were quite uninterested in the information and consent procedure; (2) persons who expressed distrust, but nevertheless participated as donors; and (3) persons who appreciated the consent procedure as a sign of a well-organised institution. While informed consent may appear partly irrelevant to the issue of trust for a large group of donors, we proceed to discuss the status and desirability of a strong focus on donors' trust in biobank experts. Indeed, more symmetry and distrust may be a creative potential in the co-production of science and society in the biobank era

What can history teach us about the prospects of a European Research Area?

This report is the result of work carried out by the Centre for the Study of the Sciences and the Humanities at the University of Bergen, Norway. The work was commissioned by the European Commission’s Joint Research Centre at Ispra (Italy), and as such this report is the final deliverable of our Service Contract 257218 with the EC-JRC. The history of science has a lot to offer to contemporary debates on research policy and on science in society. This is especially true when the history of science is not seen as independent from political, economic and cultural history. This calls for a historical sensitivity also for challenges, problems, conflicts and crises; and such a sensitivity appears to be timely in present-day Europe, where the word “crisis” is taking a predominant place on public and political scenes. Having argued that the idea that scientific knowledge should determine or prescribe the course of action is in itself part of the 17th century solutions that contemporary society has inherited as part of the problem, the report suggests possible lines of action and reflection for the European Research Area focusing on European values including diversity and tolerance, universalism, democracy and public knowledge. The report also discusses Grand Challenges and Deep Innovation, reassessing the present function of the ERA, and what policy indicators might be of use.JRC.G.3-Econometrics and applied statistic

The TECHNOLIFE project:an experimental approach to new ethical frameworks for emerging science and technology.

This paper presents the development of an experimental methodology for empirical and participatory ethics of science and technology. It is designed to detect, understand and mediate public concerns. Science and technology evolve rapidly as a result of their internal dynamics as well as the optimization of subsidy for research and innovation in recent times. Ethical frameworks for governing these developments are confronted with considerable tensions in mediating the velocity of new innovations while securing more robust institutional guarantees in order to manage and regulate in time. We argue that existing frameworks need to evolve to become more sensitive to the diversity of technological and societal challenges, of envisioning futures, and of what counts as legitimate concerns. For this reason, we give socio-technical imaginaries a key role in developing an ethical framework. Our experimental approach is seeking to establish criteria for mediating a wide range of public opinion in ways that can become embedded in legitimate, institutional procedures. Our methodological approach is also seeking to mediate between lay ethics and the discourse of professional ethicists, recognizing the fragmented character of both. We draw on theoretical constructs in current STS research, notably, those dealing with complex relations between communities, real or imagined, and the rise of new publics whose voices can be distilled and heard through mediating channels. This experimental methodology forms the central component of an ongoing European Union FP7-funded project, TECHNOLIFE

Rationing of Personalised Cancer Drugs: Rethinking the Co-production of Evidence and Priority Setting Practices

Rising health care costs is a challenge for all health care systems, and new and expensive cancer drugs is an important contributor to this. Many countries – like Norway – have therefore established priority setting institutions and systems for drug appraisals where equal treatment, neutrality and transparency are key values. Despite this, controversy surrounding drug reimbursement decisions are persistent. The development of personalised cancer medicine is seen by many as a potential solution to difficult priority setting decisions, by tailoring the right drug to the right patient at the right time. We, however, see personalised oncology and medicine in general not only as a solution, but also as a potential contributor high costs and to persisting controversy. We will argue that attempts to improve and strengthen the priority setting system – without accepting that a wider perspective on science and society is required – is likely to fuel even more controversy. In contrast, our suggestion takes a different approach building on post-normal science. From a co-production perspective, scientific, technological and societal developments are causally entangled into each other. Alongside refining priority setting principles, one can and ought to raise normative questions about the trajectory of personalised cancer medicine and of how to create a well-functioning public sphere. How can we imagine a well-functioning system of technological development and health care priority setting? Which changes in research policy and funding could support such a system? And which properties could biomarkers have in order to help society manage the health gap?publishedVersio

Transformative Translations? Challenges and tensions in territorial innovation governance

Since the 1990s, changing ways of producing and circulating knowledge have been accompanied by debates that diagnose and call for change in the relationship between science, society, politics, and innovation. Most recently in Europe, some of these debates emphasize the concept of responsible research and innovation (RRI). In this paper, we present a comparative analysis of different territorial RRI-pilots within the Horizon 2020-funded project TRANSFORM. In these pilots, different translations of RRI become visible. RRI (1) gets translated as participatory and deliberative modes of innovation governance aimed at transformative change, (2) takes the shape of citizen science projects; and (3) is enacted as participatory agenda setting and (plans for a) citizen assembly. We argue that it is the often-invisible work of establishing, nurturing, and caring for relationships within the territorial R&I ecosystems – what can the thought of as ongoing “maintenance work” – that creates the conditions for more responsive modes of innovation governance, and thus a shift towards transformative change in innovation policy. Through describing these translations and the related practices we will direct attention to the potential, challenges, and systemic barriers of this kind of work