"The challenge is the complexity" - A qualitative study about decision-making in advanced lung cancer treatment.

INTRODUCTION: The value of shared decision-making and decision aids (DA) has been well documented yet remain difficult to integrate into clinical practice. We wanted to investigate needs and challenges regarding decision-making about advanced lung cancer treatment after first-line therapy, focusing on DA applicability. METHODS: Qualitative data from separate, semi-structured focus groups with patients/relatives and healthcare professionals were analysed using systematic text condensation. 12 patients with incurable lung cancer, seven relatives, 12 nurses and 18 doctors were recruited from four different hospitals in Norway. RESULTS: The participants described the following needs and challenges affecting treatment decisions: 1) Continuity of clinician-patient-relationships as a basic framework for decision-making; 2) barriers to information exchange; 3) negotiation of autonomy; and 4) assessment of uncertainty and how to deal with it. Some clinicians feared DA would steal valuable time and disrupt consultations, arguing that such tools could not incorporate the complexity and uncertainty of decision-making. Patients and relatives reported a need for more information and the possibility both to decline or continue burdensome therapy. Participants welcomed interventions supporting information exchange, like communicative techniques and organizational changes ensuring continuity and more time for dialogue. Doctors called for tools decreasing uncertainty about treatment tolerance and futile therapy. CONCLUSION: Our study suggests it is difficult to develop an applicable DA for advanced lung cancer after first-line therapy that meets the composite requirements of stakeholders. Comprehensive decision support interventions are needed to address organizational structures, communication training including scientific and existential uncertainty, and assessment of frailty and treatment toxicity.

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.

Reframing cancer: challenging the discourse on cancer and cancer drugs-a Norwegian perspective : Reframing Cancer.

BACKGROUND: As the range of therapeutic options in the field of oncology increases, so too does the strain on health care budgets. The imbalance between what is medically possible and financially feasible is frequently rendered as an issue of tragic choices, giving rise to public controversies around health care rationing. MAIN BODY: We analyse the Norwegian media discourse on expensive cancer drugs and identify four underlying premises: (1) Cancer drugs are de facto expensive, and one does not and should not question why. (2) Cancer drugs have an indubitable efficacy. (3) Any lifetime gained for a cancer patient is an absolute good, and (4) cancer patients and doctors own the truth about cancer. Applying a principle-based approach, we argue that these premises should be challenged on moral grounds. Within the Norwegian public discourse, however, the premises largely remain unchallenged due to what we find to be unjustified claims of moral superiority. We therefore explore alternative framings of the issue of expensive cancer drugs and discuss their potential to escape the predicament of tragic choices. CONCLUSIONS: In a media discourse that has seemingly stagnated, awareness of the framings within it is necessary in order to challenge the current tragic choices predicament the discourse finds itself in. In order to allow for a discourse not solely concerned with the issue of tragic choices, the premises that underlie it must be subjected to critical examination. As the field of oncology advances rapidly, we depend on a discussion of its opportunities and challenges that is meaningful, and that soberly addresses the future of cancer care-both its potential and its limits.

Precision medicine and the principle of equal treatment: a conjoint analysis.

BACKGROUND: In precision medicine biomarkers stratify patients into groups that are offered different treatments, but this may conflict with the principle of equal treatment. While some patient characteristics are seen as relevant for unequal treatment and others not, it is known that they all may influence treatment decisions. How biomarkers influence these decisions is not known, nor is their ethical relevance well discussed. METHODS: We distributed an email survey designed to elicit treatment preferences from Norwegian doctors working with cancer patients. In a forced-choice conjoint analysis pairs of hypothetical patients were presented, and we calculated the average marginal component effect of seven individual patient characteristics, to estimate how each of them influence doctors' priority-setting decisions. RESULTS: A positive biomarker status increased the probability of being allocated the new drug, while older age, severe comorbidity and reduced physical function reduced the probability. Importantly, sex, education level and smoking status had no significant influence on the decision. CONCLUSION: Biomarker status is perceived as relevant for priority setting decisions, alongside more well-known patient characteristics like age, physical function and comorbidity. Based on our results, we discuss a framework that can help clarify whether biomarker status should be seen as an ethically acceptable factor for providing unequal treatment to patients with the same disease.

Transforming Scientists' Understanding of Science-Society Relations. Stimulating Double-Loop Learning when Teaching RRI.

The problem of developing research and innovation in accordance with society's general needs and values has received increasing attention in research policy. In the last 7 years, the concept of "Responsible Research and Innovation" (RRI) has gained prominence in this regard, along with the resulting question of how best to integrate awareness about science-society relations into daily practices in research and higher education. In this context, post-graduate training has been seen as a promising entrance point, but tool-kit approaches more frequently have been used. In this paper, we present and analyze an experiment-in the format of a Ph.D. course for early-career researchers-deploying an alternative approach. Drawing on Argyris and Schön's (1974) framing of reflective practice, and their distinctions between espoused theories and theories-in-use, the analyzed course endeavored to stimulate double-loop learning. Focusing on dislocatory moments, this paper analyses how the course tried to teach participants to reflect upon their own practices, values, and ontologies, and whether this provided them with the resources necessary to reflect on their theories-in-use in their daily practices.

Teaching Responsible Research and Innovation: A Phronetic Perspective.

Across the European research area and beyond, efforts are being mobilized to align research and innovation processes and products with societal values and needs, and to create mechanisms for inclusive priority setting and knowledge production. A central concern is how to foster a culture of "Responsible Research and Innovation" (RRI) among scientists and engineers. This paper focuses on RRI teaching at higher education institutions. On the basis of interviews and reviews of academic and policy documents, it highlights the generic aspects of teaching aimed at invoking a sense of care and societal obligation, and provides a set of exemplary cases of RRI-related teaching. It argues that the Aristotelian concept of phronesis can capture core properties of the objectives of RRI-related teaching activities. Teaching should nurture the students' capacity in terms of practical wisdom, practical ethics, or administrative ability in order to enable them to act virtuously and responsibly in contexts which are often characterized by uncertainty, contention, and controversy.

The walkshop approach to science and technology ethics.

In research and teaching on ethical aspects of emerging sciences and technologies, the structure of working environments, spaces and relationships play a significant role. Many of the routines and standard practices of academic life, however, do little to actively explore and experiment with these elements. They do even less to address the importance of contextual and embodied dimensions of thinking. To engage these dimensions, we have benefitted significantly from practices that take us out of seminar rooms, offices and laboratories as well as beyond traditional ways of working and interacting. We have called one such practice the 'walkshop'. Through walkshops, we have spent several days walking together with our colleagues and students in open outdoor spaces, keeping a sustained intellectual discussion on ethical aspects of science, technology and innovation while moving through these landscapes. For us, this has generated useful opportunities to escape established hierarchies, roles and patterns of thought and to rethink conceptual and philosophical issues from new perspectives, under new attitudes and with renewed energy. In this paper we wish to highlight the potential benefits of the walkshop approach by sharing some of our experiences and describing how we have prepared for and carried out these events. We share this information in the hope that we may encourage others to both experiment with the walkshop approach and exchange information on their own innovative processes for research and teaching in science and engineering ethics.

Making Common Sense of Vaccines: An Example of Discussing the Recombinant Attenuated Salmonella Vaccine with the Public.

Researchers have iterated that the future of synthetic biology and biotechnology lies in novel consumer applications of crossing biology with engineering. However, if the new biology's future is to be sustainable, early and serious efforts must be made towards social sustainability. Therefore, the crux of new applications of synthetic biology and biotechnology is public understanding and acceptance. The RASVaccine is a novel recombinant design not found in nature that re-engineers a common bacteria (Salmonella) to produce a strong immune response in humans. Synthesis of the RASVaccine has the potential to improve public health as an inexpensive, non-injectable product. But how can scientists move forward to create a dialogue of creating a 'common sense' of this new technology in order to promote social sustainability? This paper delves into public issues raised around these novel technologies and uses the RASVaccine as an example of meeting the public with a common sense of its possibilities and limitations.

Conversations About Responsible Nanoresearch.

There is currently a strong focus on responsible research in relation to the development of nanoscience and nanotechnology. This study presents a series of conversations with nanoresearchers, with the 'European Commission recommendation on a code of conduct for responsible nanosciences and nanotechnologies research' (EC-CoC) as its point of departure. Six types of reactions to the document are developed, illustrating the diversity existing within the scientific community in responses towards this kind of new approaches to governance. Three broad notions of responsible nanoresearch are presented. The article concludes by arguing that while the suggestion put forward in the EC-CoC brings the concept of responsible nanoresearch a long way, one crucial element is to be wanted, namely responsible nanoresearch as increased awareness of moral choices.

Rethinking scientific responsibility.

Researchers should be made co-responsible for the wider consequences of their research focus and the application of their findings. This paper describes a meta-reflection procedure that can be used as a tool to enhance scientific responsibility and reflective practice. The point of departure is that scientific practice is situated in power relations, has direction and, consequently, power implications. The contextual preconditions and implications of research should be stated and discussed openly. The reflection method aims at revealing both upstream elements, such as for instance preconceptions, and downstream elements, for example, public consequences of research. The validity of research might improve from such discussions. Validity should preferably be understood as a broader concept than the methodological concerns in science.

Why are there so many theories for sex, and what do we do with them?

It is widely known that there exists a multitude of possible explanations for the maintenance of sex; however, it is less clear how to handle such an explanatory pluralism. In this paper, we address one older and one more recent discussion on what might constitute a good theory for sex and find that they reflect a trade-off between maximizing the scientific virtues of generalism, realism, and precision. A historical analysis indicates that varying research interests and research backgrounds of the different biologists shape the trade-off. We use the reflection on the trade-offs in order to understand the existence of the diversity of theories in the field and discuss how to address the explanatory pluralism. We find that the existence of multiple theories for sex, that is, explanatory pluralism, is not surprising or embarrassing but can be seen as a resource. Still, it is important to clarify the possibilities of integration of different theories. Integration between certain theories might be complex, however, as they involve models and theories from different disciplines that have diverged historically in both conceptual and methodological aspects.