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

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

Advising From a Constructive Developmental Perspective

Advisors can enhance development by, first, identifying student\u27s meaning-making assumptions and, second, challenging those assumptions while offering support as students struggle to increase the complexity of meaning making. Constructive developmental theory is offered as a useful framework from which to encourage greater student ownership of the educational planning process. Methods of assessing and enhancing development are suggested. Two cases that depict advising from the constructive developmental perspective are offered

Filled with Desire, Perceive Molecules

Could there be a Taoist philosophy of Acute Myeloid Leukaemia (AML)? This chapter discusses why a molecular treatment of AML has been so hard to find but still so intensely researched, and exposes some of the ethical dilemmas involved when treating this aggressive blood cancer. It does so by applying the concepts and style of the ancient Chinese masterpiece Tao Te Ching, the essence of which is that the real world is richer than what can be expressed by language.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

Indicator development as a site of collective imagination? The case of European Commission policies on the circular economy

In recent years the concept of the circular economy gained prominence in EU policy-making. The circular economy promotes a future in which linear ‘make-use-dispose’ cultures are replaced by more circular models. In this paper, we use the concept of sociotechnical imaginaries to ask how an imaginary of circularity has been assembled and stabilized, which imaginative resources were drawn on, and how goals, priorities, benefits and risks haven been merged with discourses of innovation, sustainability and growth. Drawing on policy documents and interviews with policy officers of the European Commission, we argue that the monitoring framework and indicator development function as a site collective imagination in which desirable ‘circular’ futures are co-produced. These futures are imagined to provide novel opportunities for the private sector and to generate jobs and economic growth while at the same time improving the natural environment as measured by selected environmental indicators.publishedVersio

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

Translating tools and indicators in territorial RRI

Introduction: By a series of calls within the Horizon 2020 framework programme, the EU funded projects intended to deploy Responsible Research and Innovation (RRI) at a territorial level, in regional research and innovation ecosystems. This paper presents efforts to document and evaluate the achievements in TRANSFORM, one of these projects. Methods: Evaluative inquiry and theoretical reasoning. Results: Noting the need for a general principle to be interpreted, adapted and translated in order to be rendered meaningful at a local level, we studied precisely these multiple territorial translations of RRI, the organizational and institutional orderings with which they co-emerge and the challenges that come with these translations. An important shared feature is that RRI work does not start from zero, but rather builds on pre-existing relationships and repertoires of collaboration. The RRI project is hence a way to continue ongoing work and follow pre-set purposes, aims and objectives, as a form of “maintenance work”. In this very human sense, RRI is deployed with a logic of care in the regional context, while the Horizon 2020 calls and proposals above all are formulated in a logic of choice, to be assessed by indicators. Discussion: We warn against undue standardization of RRI by toolification and use of quantitative indicators, and recommend that RRI performance is monitored by methods of evaluative inquiry.publishedVersio