3rd ELSA Norway Conference Abstracts

11-13 April, 2016

Hurtigruta Finmarken

Topic: When does ELSA/RRI research succeed?

The ELSA Norway conferences showcase different ways of doing ELSA/RRI. We first of all

encourage participants of the conference to present their research outcomes. This allow for

comparative scrutiny of ELSA achievements and what ELSA/RRI researchers find worth

doing. At this third conference we more specifically ask the question: When does ELSA/RRI

research succeed? We encourage participants that offer meta-analysis to keep the success

criteria in mind as well. How do ELSA Norway members construct ELSA/RRI methods and

ends in their research? In which manner do disciplinary contexts (such biotechnology,

nanotechnology, or information technologies) matter?

ELSA research in Norway has a fairly long history, the larger part coinciding with the

existence of two ELSA RCN research programs (2002-2014) now extended into

SAMANSVAR (2015-2024) presented under the heading of RRI (Responsible Research and

Innovation) following international trends. During these years, in part due to shifting ELSA

policies, ELSA researchers have been recruited from quite different interdisciplinary scholarly

fields like Cultural studies, STS, Technology assessment or Applied ethics. The diversity of

scholarly background now appears to increase, given the current RRI initiatives.

A wide variety of ELSA scholarship is arguably needed to help institutions respond

adequately to complex and shifting science-society relationships. Understanding differences

as a resource for ELSA research, the ELSA Norway conferences offers unique opportunities

to connect researchers that, in spite of differences, share interests in research that identify,

analyze and respond to ethical, legal and societal concerns of emerging science and

technology

ABSTRACTS Plenaries

Manday 11. April Plenary I: Tsjalling Swierstra, Maastricht University Monday 1215-1300 Responsible Innovation: Orienting ourselves in a technological culture Chair: Rune Nydal

Abstract

It is easier to demonstrate that we need Responsible Innovation than that RI is actually effective. What criteria would be adequate to assess that efficacy, and what kind of empirical evidence could warrant a negative or positive verdict? And now we have started thinking about it: are we even sure what RI means precisely? Does every type of innovation that results in products that help us realize important and shared values, merit this label? If Norwegian government wants to fund RI, would it be sufficient to fund private companies that make non-controversial technologies like thermometers or low energy light bulbs? Or does RI refer to a specific type of innovation, with specific features and embodying specific procedural norms and values? I will argue that it is indeed prudent to restrict the RI concept to innovations that aim to solve value conflicts in a reflective and inclusive manner. How then to assess the efficacy of this RI? One way would be by adopting a “the proof is in the pudding” approach. For example, an innovation would than be responsible if the artefacts are designed to solve value conflicts. However, this approach would suffer in extremis from the weaknesses that are intrinsic to any consequentialist approach. The innovator has always limited influence on whether the artifacts will be taken up in society, by whom, and for what purposes, and by now we have learned that in the case of technology unexpected side effects are always to be expected. A better bet then seems to be to focus on the efficacy of the innovation process – rather like Immanuel Kant decided to focus on good intentions rather than on good outcomes. The question would then become: how effective are attempts to bring existing innovation processes in accordance with the normative standards of RI? Unfortunately, this approach is equally fraught with problems and puzzles. I will discuss some empirical evidence that innovators can have various “reasonable reasons” not to conform to the normative standards and assumptions associated with RI, like stakeholder involvement, anticipation, and reflectivity. More generally: it is questionable whether current conceptions of RI, rooted in normative ideals like contract theory and deliberative democracy, are adequate for the opaque, agonistic, fragmented, and highly dynamic environments in which innovators typically have to decide and act. This normative uncertainty considerably complicates the attempt to assess how effective RI is in “improving” current innovation processes. I will conclude that the question of efficacy can neither be convincingly answered on the product level nor on the process level, but that the importance of RI has to be sought in its contribution to overarching societal learning processes regarding the question: how to orient ourselves in a technological culture? Tsjalling Swierstra (1960) studied philosophy and political science in Amsterdam and Groningen. He researches philosophical, ethical and political, questions concerning technology in general, and concerning medical biotechnology in particular. Swierstra is chair of the Department of Philosophy at Maastricht University, and Director of the Graduate School of the Faculty of Arts and Social Sciences. He is also director of the recently established Centre for the Ethics and Politics of Emerging Technologies, and chairs the Dutch Society of the Philosophy of Medicine.

Plenary II: Monday 1350-1435 Break out groups: When does ELSA/RRI succeed? Chair: Lars Ursin Plenary III: Erik Fisher, Arizona State University Monday 1700-1745 Measure with Care: Coping with the Contradictions of Socio-Technical Collaborations Chair: Heidrun Åm What warrants the socio-technical collaborations many of us in the ELSA (or post-ELSA) community are presently undertaking? What efforts can, and should, we simultaneously undertake in order to investigate, even demonstrate, their value—to ourselves, our collaborators, others? How can we engage in such efforts without compromising our own professional and normative commitments? In this talk, which proceeds against a background of such vexing questions, I will outline what I see as the main governance rationales for designing, conducting and assessing the kinds of experimental, interactive, socio-technical dialogues that continue to interest socio-humanistic scholars, scientists and engineers, and policy practitioners—even as they present frustrations, challenges and risks. Drawing upon the intervention-oriented approach developed by myself and others in the Socio-Technical Integration Research (STIR) program, I will illustrate one way that integration scholars can productively take such questions into account, while at the same time attempting to stay mindful of the broader policies and politics of engagements with technoscientific experts. I will argue that STIR tries to balance the antinomies of expert engagement in its experimental design, recruitment of would-be collaborators, formulation of research questions, and attempts to document and categorize integration outcomes. As effective socio-humanistic engagements with technical experts as such probably are (and should be) unavoidably linked to ambivalence, I suggest consciously including this in the construction and use of collaborative integration measures and measurements. Erik Fisher is an associate professor at School for the Future of Innovation in Society and the Consortium for Science, Policy and Outcomes and associate director for integration at the Center for Nanotechnology in Society at Arizona State University. His research investigates conceptual linkages from the lab to the legislature, including policies and practices of social science and humanistic engagements with technoscience. Fisher was PI on the Socio-Technical Integration Research (STIR) project, which studied the effects of social science interventions on decision-making in 30 laboratories around the world, and is currently PI on the STIR Cities project, which seeks to move STIR out of the lab to a diversity of expert performance sites in both Phoenix and Portland. As of April 2016, Fisher serves as editor-in-chief of the Journal of Responsible Innovation.

Tuesday 12. April Plenary IV: Gaymon Bennett, Arizona State University Tuesday 0900-1030 Observe, Participate, Critique Commentaries: Ann Rudinow Sætnan and Matthias Kaiser Chair: Berge Solberg Abstract Over the last decade, in both Europe and the US, there have been urgent calls for the design and implementation of “post-ELSI” modes of collaboration among scientists, engineers, and humanists. What such collaboration consists in, what it might hope to accomplish, and how success ought to be evaluated, is not always clear. What is clear, however, is that an essential condition of such collaboration is that it must be more than just the “ethnographic” observation of science on the part of humanists. Equally, however, it must be more than the expectation that humanists will simply, if tacitly, endorse of the goals, methods, and politics of scientific research – whether in the form of public outreach or “thin” talk of responsibility. Collaboration, rather, must also include critique – a systematic commitment to identifying, and being honest about, the limits of a given enterprise and how (and whether) those limits can be overcome. The question of how to turn critique into a sustainable practice, however, is an elusive one. How can collaborators undertake the work of critique, while also fostering the trust, curiosity, and dedication to mutual flourishing that is basic to any research enterprise? Drawing on my experiences as a social scientific collaborator in stem cell research, synthetic biology, and systems engineering, I will propose that critique – rightly understood – requires a series of “double virtues.” On the one side, humanists must actively cultivate a feel for the pleasures of scientific and technological innovation (including their own), while simultaneously nurturing an unremitting skepticism toward the moral and economic status quo that currently governs research and its application. On the other side, in order for critique – and thus collaboration – to work, scientists and engineers also must be allowed justify and pursue their work through a parallel ethical frame: they must be given the freedom to pursue their work as a deeply personal and pleasurable calling, while actively cultivating the ability to think seriously about regnant power relations and how those often-unjust relations may very well block their best efforts to contribute positively to the world. Gaymon Bennett is a professor of Religion, Science, and Technology at Arizona State University. He helped design and carry out the embedded-ethics program at the Synthetic Biology Research Center in Berkeley, and subsequently helped launch and direct the Center for Biological Futures at the Fred Hutchinson Cancer Research Center in Seattle. His books include Technicians of Human Dignity: Bodies, Souls, and the Making of Intrinsic Worth, and the co-authored Designing Human Practices: An Experiment with Synthetic Biology.

Plenary V: Helene Ingierd, Vidar Enebakk, Torkild Vinther, FEK - The Norwegian National Research Ethics Committees Tuesday 1700-1830 Research ethics in law Chair: Berge Solberg Abstract for session The aim of the session is to present the view of the Norwegian National Research Ethical Committees (FEK) in response to the revision the Act on Research Ethics and Research Integrity (forskningsetikkloven) initially proposed by the Ministry of Education and Research in autumn 2014. We will elaborate further the arguments in FEKs official response (November 2015) related to three themes of broader interest both in Norway and abroad: i) Research Integrity, ii) Responsible Research and Innovation (RRI) and iii) Research Misconduct. Hopefully the session will raise interesting questions concerning the relationship between ethics and law. About FEK: The Norwegian National Research Ethics Committees are independent public agencies providing guidelines and addressing questions regarding research ethics in all subject fields. Vidar Enebakk Research integrity between ethics and law NESH- The Norwegian National Research Ethics Committees

Abstract

When the Ministry of Education and Research initially proposed a revision of the Act on Research Ethics and Research Integrity in autumn 2014, it was presented in a rather narrow sense restricted to a) the responsibility of institutions and b) the handling of research misconduct. Eventually, during 2015, the scope was gradually expanded to cover all aspects of research ethics resulting not only in a revision, but rather in a new law. These broader aspects of research ethics, however, was not sufficiently elaborated, resulting in a series of confusions and contradictions in the proposal from the Ministry, especially concerning the understanding of Research Integrity (RI). FEK, in our rather critical reply, addressed these tensions in detail, suggesting both new concepts and new definition to clarify these fundamental questions. We suggested the revision was over-ambitious and lacking a proper foundation. And we advised that the ongoing process ought to be restricted to the initial aim revising minor issues in the existing law focusing on RI and the handling of research misconduct. The broader aspects of research ethics, we suggested, ought to be treated subsequently in a separate Norwegian Official Report (NOU). While these arguments probably will not have much of an impact on the current revision, we would like to use this occasion to present them for a competent audience. Hopefully the discussion can contribute to a better understanding of the difference between ethics and law. Helene Ingierd NENT - The Norwegian National Research Ethics Committees What do we talk about when we talk about Responsible Research and Innovation (and how should we deal with it)?

Abstract

Research ethics, as defined by the Norwegian National Research Ethical Committees (FEK), consists of four main areas: (1) Norms dealing with good scientific practice, related to the quest for truth; (2) norms related to the relationship between researchers; (3) norms related to the relationship to those directly affected by the research; and (4) norms related to the wider responsibility to society. A central premise for the work of the committees is that we need to distinguish between cases of scientific misconduct (1) and other research ethical questions (2, 3 and 4): “Research ethical

questions and scientific misconduct should be handled differently, both locally and nationally” (FEK in the letter to the Ministry of Education and Research, 2015). Responsible research and innovation (RRI) is a concept that has evolved the latter year. However, there is some variation in the principles that are considered to constitute RRI. In some documents, RRI is primarily restricted the societal responsibility of research, connected to traditional research ethical principles of beneficence and non-maleficence. It then specifically denotes the responsibility to consider the impact of research and innovation on society. Alternatively, RRI is promoted as a wide concept which encompasses several key components, in which research ethics is only one subordinate concept. Conceptual clarity is a pre-condition for sound discussions on how to deal with cases and questions related to RRI in research ethics committees, nationally and locally. This paper aims to map out various conceptions of RRI and suggests how it may be understood as an integral part of research ethics. This will in turn prepare the ground for a more in-depth analysis of how to best deal with issues related to RRI. Torkild Vinther Granskingsutvalget - The Norwegian National Research Ethics Committees Dealing with research misconduct: Legislation or self-regulation? The Norwegian approach

Abstract

What is research misconduct? In Norway, you will find this defined by law. The legislation regulates responsibility for research integrity and prevention. Further, it regulates dealing with misconduct, at least on a national level. However, it is still the presumption that the main responsibility for prevention and for investigating allegations lies at the local level although under an umbrella of “national oversight”. The Act on Research Ethics (and Research Integrity) from 2006 is under revision, raising some issues e.g. about local responsibility regarding misconduct and questionable research practices besides responsibility for individual researchers. Does one need formal appeal mechanisms when a national oversight body is established? What about openness versus anonymous whistleblowing and protection of alleged persons and whistleblowers? These are some of the discussed issues. The Norwegian model or approach seems to be in opposition to at least some other European responses and to the overarching principle of self-regulation promoted e.g. in the European Code of Conduct for Research Integrity. To some extent, the approach of Norway may be more in line with the policy in USA. By comparing different approaches, the aim is to discuss whether the proposed revision of the legislation will bring Norway on track, safeguarding research and research integrity. Is it rather derailing i.e. reducing internal motivation for self-regulation forced by regulation from outside the research community?

Wednesday 13. April Plenary VI: Workshop: Gry Oftedal, Audrun Utskarpen, Ellen-Marie Forsberg Wednesday 0900-1030 RRI in the Centre for Digital Life Norway Chair: Nora Sørensen Vaage

Abstract

The newly funded Centre for Digital Life Norway (DLN) shall facilitate transdisciplinary research between the life sciences, the mathematical/ICT sciences and the engineering sciences. RRI shall play a major role in all areas of the centre. The RRI goals are (1) to build and maintain a national biotechnology RRI research infrastructure, (2) to embed RRI across the DLN activities and (3) to integrate RRI research within the DL funded research projects. DLN’s RRI part shall also develop engagement activities in close cooperation with the Norwegian Board of Technology and The Biotechnology Advisory Board. This workshop shall initiate a first dialogue for building such a national biotechnology RRI infrastructure. Which experiences can the members of the ELSA network bring to DLN? What works, what does not, which visions and ideas of concrete practices do we have for this RRI component in DLN? The RRI activity in DLN is currently led and coordinated by Heidrun Åm, Asle H. Kiran, Nora Sørensen Vaage and Roger Strand. For this workshop, we asked three commentators to give statements on what they would recommend the DLN RRI within their area of speciality: what ELSA/RRI activites and research is important to conduct and how do you do it? When do we succeed? Their statements are then followed up by a plenary discussion to develop strategies for RRI in DLN. Schedule: Chair: Nora Sørensen Vaage 1) Introduction of DLN by Asle H. Kiran and Heidrun Åm 15-20 minutes 2) Invited speakers:

Ellen-Marie Forsberg, biotechnology programme board RCN: How to achieve a successful RRI part in DLN

Gry Oftedal, philosopher: How to best implement philosophy of science as RRI activity in practice

Audrun Utskarpen, director biotechnology council: Public engagement around “digital life” 3) Discussion and brainstorming in the plenary

https://www.ntnu.no/blogger/elsa/the-centre-for-digital-life-norway-an-ambitious-initiative-within-biotek2021/

Abstracts Parallel sessions

Monday 11. April

Parallel Session I A: Evaluating science: successful RRI? Monday 1445 – 1615 Løvstakken. Chair: Mathias Kaiser

Evaluating science evaluation Ann Rudinow Sætnan, Gunhild Tøndel and Bente Rasmussen Department of Sociology and Political Science, Norwegian University of Science and Technology- NTNU

Abstract

Since 2005, Norwegian science has been the object of a (for Norway) new system of science evaluation, nicknamed “tellekanter” in Norwegian. This system is modelled on similar systems implemented much earlier in the UK and elsewhere and emulated later (from 2010) in Denmark. This system involves the counting and weighting of various indicators of science productivity and (in the eyes of some) quality. Key among these indicators is the number of publications in refereed journals. Such forms of accountancy – of watching, measuring, and counting – are, according to some, a non-invasive form of interaction. Supposedly, what we see/measure/count is simply what is, regardless of our gaze. Thus the new science evaluation system presumably simply measures and rewards scientists for productivities and qualities the science community still controls autonomously within its own peer review system. But is that actually the case? Can this accountancy system create aberrations in peer review? Picking up from two early attempts at answering that question (Sørensen 2010 and NIFU 2012), this paper examines whether the new surveillant practices of science performance management are having effects not only on the productivity of academic work, but also on its content. To use Karen Barad’s terms, is the measuring device a part of, and thereby affecting, the phenomena being measured? For various historical, disciplinary and structural reasons, we find that the discipline of Sociology, and especially at NTNU’s Department of Sociology and Political Science, is currently poised as something of a canary in this particular data mine. Identifying a striking pattern within the department’s current structure and publication records, and analyzing how these patterns can be expected to intra-act with various reward and selection practices integrated into the science evaluation system, we find that evaluation system may contribute to a shift in the balance of meta-theoretical and methodological approaches within the department, and perhaps within the discipline as a whole. Taking a broader view, what does this say about surveillance in general? Should evaluations of surveillance technologies be (re-)exploring the intra-actions of surveillance and society, looking for new forms of optic effects?

What does success for ELSA/RRI research mean? Bjørn Hofmann Center for Medical Ethics, University of Oslo

Abstract

ELSA research is defined as “a funding category allocating funds for socio-humanists to research aspects of large scale techno-scientific priority areas like genomics and nanotechnology” (Elsa Norway). The transition from ELSI to ELSA/RRI research intended a move from identifying and addressing ethical implications in terms of ethical “issues” and “negative downstream (side) effects” to upstream directions for societal change in term of “aspects.” RRI is defined by the European Commission as “the comprehensive approach of proceeding in research and innovation in ways that allow all stakeholders that are involved in the processes of research and innovation at an early stage (A) to obtain relevant knowledge on the consequences of the outcomes of their actions and on the range of options open to them and (B) to effectively evaluate both outcomes and options in terms of societal needs and moral values and (C) to use these considerations (under A and B) as functional requirements for design and development of new research, products and services." The objective of this study is to scrutinize what we mean when we ask “what is the success of ELSA/RRI research?” Is it the impact on implementation of technology; is it the general benefit of the technology for society or specific members of society; is it the quality, validity, or justification of the research, innovation, deliberation, and/or implementation process; is it the stakeholder involvement or the mode of responsibility of these processes; is it adherence to formal quality criteria or indicators for ELSA/RRI; or is it the number of publications in the field? This study explores success (outcome) criteria of ELSA/RRI research. It finds that the success criteria are diverse and partially vague, and that this has implications for the outcome assessment and the responsible governance of ELSA/RRI programs. Tacit ethics in the evaluation of ELSA/RRI successes Anita Borch and Harald Throne-Holst SIFO- National Institute of Consumer Research & Oslo and Akershus University College

Abstract

The main question of this conference is: When does ELSA/RRI research succeed? One definition of successful ELSA/RRI research may be that ethical considerations have been an integrated part of the research process from application and throughout the research and innovation processes. This should then ideally result in reduced risks in both the short and the long term. As such, measuring successful ELSA/RRI research means to document a) that ethical considerations have been made during the process, and b) that necessary actions are taken in the RRI process based on these considerations. However, a complicating element in this evaluation is that a number of the ethical considerations made during a research and innovation process most likely are tacit. That is, many of the assessments people make about ‘right’ and ‘wrong’ in RRI processes are made without consciously thinking about it or articulating them to others. In effect, evaluations of success may be based only on a limited part of the ethical considerations that have been documented in written text in the process. To increase the validity of such evaluations, this paper address how tacit ethics can be understood, articulated and measured. The analysis is based on theories of tacit knowledge and of a case study of biotechnological research and innovation process

Parallel Session I B Regulating science Monday 1445 – 1615 Ulriken. Chair: Anne Ingeborg Myhr

REC’s evaluation of applications concerning genome sequencing Heidi Beate Bentzen Centre for Medical Ethics and Norwegian Research Center for Computers and Law, University of oslo

Abstract

In Norway, health research is regulated by the Health Research Act, and in some cases also by the Biotechnology Act. Health research projects must seek advance approval from The Regional Committees for Medical and Health Research Ethics (REC). In collaboration with Tommy Tranvik, I conducted a study of the Norwegian REC’s evaluation of applications concerning health research that involved genome sequencing. We examined how REC draws the distinction between the Health Research Act and the Biotechnology Act, and the committees understanding and interpretation of the Biotechnology Act. The results of the study will be presented, as will reflections on the success of the research and the methodology. Why law needs context-sensitive bioethics - Norwegian large scale genomic research Berge Solberg Department of Public Health and General Practice, NTNU

Abstract

For more than six years, there has been a controversy on the regulation of Norwegian biobanks and genomic research. The question has been whether the Biotechnology act applies to this kind of research. If it does, cumbersome and costly procedures of genetic counselling, informed consent and re-consent might be necessary, slowing the effectiveness of research. If it does not, the rights and interest of those participating in this type of research, might not be protected. So the arguments go. The legal expertise has not been able to settle this dispute. Now, a working group in the REC system has tried to find a solution. The solution has further been modified by bioethicists. The new law interpretation is in line with international recommendation for guidelines on return of result, information and consent in this type of research. In this paper I will highlight three points: First I will describe the new guidelines for genetic research in Norway, second I will reflect upon whether bioethicists should do (creative) law interpretations and third I will comment upon the fact that Norwegians fancy hard law for regulating ELSA-issues. Consent according to the law versus consent in practice Frida Anthonisen Master student, Norwegian Research Center for Computers and Law, University of Oslo

Abstract

Genetic information can be said to be uttermost private and revolves around parts of our identity that we for the time being cannot change during our lifespan. Figures show that it was conducted approximately 50,000 genetic tests at the Norwegian hospital laboratories and as applicability of such examinations is expanding, the numbers are only expected to inflate. It has been stated that it is likely that the greater share of hospitals in Norway within the next ten years will offer full genetic sequencing to all patients. My thesis is interdisciplinary, in that it is both legal, societies scientific and technological. The main theme of this thesis is to examine what the Norwegian law is saying about content in relation to genetic testing, both in research and health care, and investigate if this differs from how it is carried

out in practice. The methods I will use to answer these issues will be to gather information by using document studies and quality studies (interview). The document studies are to find relevant laws and their preparatory work. The case for the interviews is to interview employees who work at The Section of medical genetics, in The Hospital in Telemark. The section at hospital in Telemark is recognized in Norway to be foremost in genetic testing. The questions I will ask them is mainly about how they give out information to patients, how they collect consents from their patients, how they gather the patients genetic information and how they keep records of it and if and how they might share the data with other organizations. The theme of my thesis will give rise to ethical, legal as well as political issues.

Parallel Session I C Bodies and politics Monday 1445 – 1615 Lyderhorn. Chair: Merete Lie

On the art of medicine and transhumanist dreams

By Jan Helge Solbakk

Abstract

The point of departure in this presentation is the tripartite concept of techne found in the most famous book in Corpus Hippocraticum: Peri techne, traditionally translated as On the Art, contains an understanding of ‘science’, ‘technology’ and ‘art’ that will be used to critically address transhumanist aspirations. My conclusion is that these aspirations not only lack ethical justification; epistemologically speaking they are dreams that don't stand up to the reality test.

“Technologies of normalization” in a critical theoretical perspective Patrick Kermit Department of Social Work and Health Sciences, NTNU

Abstract

In the period from the early 1990-ies and to around 2005 the discussions concerning paediatric cochlear implantation were at its heights. The American sociologist Harlan Lane is a prominent scholar who lend his support to radical Deaf notions of cochlear implantation as a form of genocide where “Deaf children were literally being killed and reborn as hearing children” (Nakamura, 2006, p. 144). Arguing from a social constructivist position, Lane developed a critique of different types of technology which he coined “technologies of normalization” (Lane, 2002, p. 360). According to Lane, these are technologies bearing in common that they aim at correction something considered as a deviation from the “normal”, for example cochlear implants (correcting lack of hearing), growth hormone treatment (correcting lacking height) or the technology of IQ-measurement (diagnosing and treating low IQ through various forms of special needs interventions). Even though Lane might be considered a bit too radical in his attempts to promote ideas about societal diversity, he might nonetheless promote some important aspects relevant to technology assessment in general. In his early work “The birth of the clinic” Michel Foucault (2003) suggests that there is “a spontaneous and deeply rooted convergence between the requirements of political ideology and those of medical technology”(Foucault, 2003, p. 45). In this paper, I aim at exploring Foucault’s sentiment in light of later developed critical theories of recognition. Lane’s examples might serve as interesting cases where one could argue that technology fails to recognize particular individuals and instead only promotes conditioned recognition to those willing to subject to the technologies.

Foucault, M. (2003). The birth of the clinic. London and New York: Routledge. Lane, H. (2002). Do Deaf People Have a Disability. 2(4), 356-379. Nakamura, K. (2006). Deaf in Japan. Signing and the politics of identity. Ithaca and London: Cornell

University Press. Cognitive enhancement: a responsible upgrade of our nature? Laurens Landeweerd Radboud University Nijmegen

Clare Shelley-Egan Oslo and Akershus University College of Applied Sciences

Abstract

New disciplines emerge, new collaborations between academia and industry are forged and new products are developed on a frequent basis. Fundamental scientific insights concerning human nature are increasingly functionalised to shape, steer and modify this nature, for health or other purposes. This development attracts both enthusiastic engagement (notably by so-called early adopters) and societal concern. The issues carried along affect basic worldviews and values of different groups and communities and raise both utopian and dystopian views of the future. Human enhancement is an increasingly relevant part of today's biomedical practice. It can be defined as the application of cutting - edge science and advanced technologies for improving, upgrading or transforming human characteristics. Examples of human enhancement include genetic engineering, nootropics (such as Modafinil and Ritalin), brain-computer interfaces (BCIs), neuro-implants, tissue engineering, deep brain stimulation (DBS), transcranial magnetic stimulation (TMS), life extension technologies and cryogenics. Systematic application of these technologies, according to both proponents and opponents, could lead to a radical transformation of human qualities in the future, and ultimately perhaps even to a radical change of ‘human nature’ as such in the arrival of the transhuman or posthuman. In particular, Cognitive Enhancement has become a prominent issue in current ethical and societal debates. These days, the science-society contract requires constant recalibration. A responsible approach to policy making for research and innovation with potential applications for human enhancement is a prerequisite for the moral acceptability of cognitive enhancement. This also involves studying the ‘softer’ aspects of such science and technology, such as the integrity of life, naturalness, and issues related to personhood and personal identity. The shift from ELSA to RRI in European policy contexts also influences the moral analysis of human cognitive enhancement. Landeweerd and Shelley-Egan will discuss these issues and considerations in the context of the Naturalness in Human Cognitive Enhancement (HCENAT) project.

Tuesday 12. April

Parallel Session II A: Evaluating science: successful RRI? Tuesday 1100-1230 Løvstakken. Chair: Bjørn Hofmann

Socialisation of biotechnology and nanotechnology in Norwegian news media Gisle Solbu Department of Interdisciplinary Studies of Culture, NTNU

Abstract

RRI calls for an inclusive, interdisciplinary and multi-actor approach to scientific conduct, or what we—with the vocabulary of Bijker and d’Andrea (2009)—would describe as an increased socialisation of research and innovation. The demand of increased socialisation presumes that the success of developing and implementing new technologies is dependent on proactively embedding technologies within society. Scientists should thus engage among others in science communication and society should have the chance to engage in science, for example by participatory initiatives. Our analysis approaches the question of “when should RRI research be considered successful?” by exploring existing processes of socialization empirically. That is, we assume that before we can demand more socialization we need to find out which kind of socialization already is taking place. One way of studying existing socialization processes is by studying mediatization. As expressed in the concept of mediatization, media contribute to embedding, dis-embedding or re-embedding socio-technical relations as well as the articulation of concerns, (Hjarvard 2013, Hepp 2011). Media is thus an important part of public sense-making, and an arena where the conflated domains of science, innovation, technology, politics, industry and the public come together and are shaped. Empirically, the study rests on an extensive analysis of the coverage of biotechnology and nanotechnology in the main Norwegian newspapers the period 2010-2015. In this media analysis we asked the following questions: What kind of socialization of biotechnology and nanotechnology can we identify in Norwegian news media today? What kind of concerns are articulated and by whom? And further, how does this contribute to the social shaping of the two fields of technologies? We found significant differences in the mediatization of bio- and nanotechnology. Thus, biotechnology’s mediatization is marked by critical assessments and many actors are involved, whereas tales of expectations, promises and progress dominate the mediatization of nanotechnology. This again produces differences in the articulations of ethical, legal and social aspects in the news media. Paradoxically, this means that biotechnology is socialized more than nanotechnology. Thus public debate does not necessarily imply something negative. From ELSA to RRI – Are the ‘whys’ to follow from the ’hows’? Rune Nydal Programme for Applied Ethics, Department of Philosophy and Religious Studies, NTNU

Abstract

Methods depend on research questions. Given a why we turn to the hows, searching for the best tool for the job to be done, evaluating the research outcome in terms of how well the questions are answered. In RRI contexts – this is often turned upside down as the research approach itself is being focused, like demonstrated in calls for ‘experimentation’ on collaboration. How do we understand the whys of RRI? What are the success criteria of such experiments?

The assumption that we need to work differently call for a normative diagnosis of the dysfunctions of present well established work modes. Experiments on novel work modes should thus make these dysfunctions evident, that we can achieve more by working differently. If we are to avoid a dogmatic turn to some RRI methodology, this paper argues, we need to test the methods in terms of how well it helps us identify and deal with pressing normative issues - on how the alternative approaches leads forward to the better. Becoming with RRI Ane Møller Gabrielsen Department of Philosophy and Religious Studies, NTNU

This paper explores the RRI approach and the shaping of a RRI researcher in the recently started project Crossover Research 2.0: Well constructed Knowledge Commons. The Crossover project envisions a collaborative mode of integration where computer scientists, biologists and medical researchers work together with sociohumanists to design a “prototypical” Knowledge Common for the distribution of biological knowledge that will enable computational models and systems medicine. Although Crossover Research 2.0 is a continuation of an already established collaborative mode, the project itself constitutes an experimental setting where the participants’ identities and goals are continuously being shaped and reshaped. As the focus lies on integration and collaboration, the boundaries between RRI and the rest of the project become somewhat blurry in terms of outcomes and success criteria. Who are the RRI-researchers in this particular setting? What is the difference between “RRI outcomes” and the outcomes of the project as a whole? It is therefore necessary to define what RRI means in this specific context, and what being an “RRI researcher” or “RRI practitioner” actually entails. With this as the backdrop, the paper explores the conditions for successful RRI research and possible outcomes from Crossover Research 2.0.

Parallel Session II B: Value conflicts Tuesday 1100-1230 Ulriken. Chair: Anne Ingeborg Myhr

Should ethics solve value conflicts? An argument from uncertainty Espen D. Stabell Department of Philosophy and Religious Studies, NTNU

Abstract

I am part of an interdisciplinary research project at NTNU, looking at different aspects of deep see mining: the activity of mining for minerals on the ocean floor. Part of my work is to suggest a viable RRI strategy for this research project. In 2005 UNEP released the Millennium Ecosystem Assessment (MA). This report suggests a framework for assessing deep see mining with respect to the effect on ecosystems and “human well-being”. I investigate a tension I find between values MA refers to as “intrinsic” – and values the ecosystem has for human well-being. I look at ways to resolve the tension, considering both quantitative and philosophical approaches. I propose that it can be useful to shift the focus away from quantification, (in)commensurability, and the quest for solutions, to the problem of value conflicts. I argue that value conflicts introduce into

assessments what can be called “evaluative uncertainties”, understood as a lack of the knowledge necessary to give a sound evaluation of outcomes and courses of action. My argument is that evaluative uncertainty – like other forms of uncertainty listed in the MA – should be studied and made explicit, although by other means than quantifiable uncertainties (risks). In contexts such as the MA, this can be done by having separate ethical analyses looking specifically at evaluative uncertainties, explaining the difficulties they pose and making recommendations on how to relate to them. How values guide nano-medical research A discussion based on the NANOCAN project on nanoparticles in cancer therapy and diagnosis Anders Strand Department of Philosophy, Classics, History of Arts and Ideas (IFIKK), University of Oslo

Abstract

This paper discusses how values guide research, and uses the NANOCAN project on nanoparticles in cancer therapy and diagnosis as a case study. NANOCAN aims to further our understanding of the behavior of nano-materials in the body, focusing on biodegradable nano-particles for cancer diagnostics and targeted cancer drug delivery. In the paper, we seek to make the values implied in – and relevant for - choices among these alternatives explicit, and thereby further our understanding of how values enter into research processes in this area. We observe that values often play their role implicitly, as a result of funding incentives, regulations, and structural and organizational features of the research process. Based on this, we discuss how responsible research can be facilitated by making value priorities explicit targets of normative assessment. We conclude that - while it might be obvious that values guide research - knowledge how enables assessment and improvement of value based decisions, and of the frameworks within which these decisions are made. In particular, responsible research can be facilitated by making value considerations explicit and by increasing the awareness of relevant values among researchers. Moreover, since our case clearly illustrates how funding incentives and other ways of external enforcement of values determine research, there are further levels at which responsible research should be facilitated. For example, when funding of research is fragmented among different funding sources - and across different programs within single funding agencies - it should be examined how potentially problematic biases in medical research and resulting knowledge can be properly addressed. We also point out how diachronic value conflicts require sensitivity to perspectives across different roles in - and stages of - research. Why RRI is integral to a broad concept of research ethics May Thorseth Programme for Applied Ethics, Department of Philosophy and Religious Studies, NTNU

Abstract

An increasing appeal is made to engineers to act responsibly. A first reason for this appeal is that we cannot hold on the presupposition that technologies are neutral with regard to values. This value-laden characteristic of technologies implies that the actors who contribute to the design of technologies have a certain responsibility for the values that are produced and reproduced by the use of these technologies. A second reason is that technologies, once societally successful, may become resistant to change, even if these technologies have adverse effects. Technologies may become entrenched or locked-in, as they create interdependencies that cannot be overcome. The threat of such undesirable future developments prompt technology developers to prospectively consider how such developments can be prevented, by identifying the variety of socio-technical configurations that may emerge. A third reason for the appeal to responsible engineers is that new

technologies may become publicly contested because they fail to take important societal values into account. Hence, the chances of a successful take-up of a new technology are increased if the values at stake are addressed in the actual design and development of such a technology. Indeed, it can be said that one of the essential elements of responsible innovation is the explicit and deliberate inclusion of values in the design of new technologies. Here it is argued that a narrow definition of research ethics is insufficient in educating responsible engineers. Because technology is shaping actions, definitions and values, a broad definition of research ethics is required. As an example production of reliable, safe and sustainable technologies needs to comprise issues like e.g. justice within and between generations. A broad understanding of research ethics and RRI is also in line with ‘general competence’ as discussed by The Norwegian qualifications framework for lifelong learning (Kvalifikasjonsrammeverket).

Parallel Session II C: Personalised medicine Tuesday 1100-1230 Lyderhorn. Chair: Jan-Helge Solbakk

Ambitious and modest views of Personalised Medicine: some ethical and social implications Giovanni De Grandis Department of Philosophy and Religious Studies, NTNU

Abstract

Personalised Medicine emerged in the late 1990s as a promise to revolutionise our approach to healthcare thanks to the breakthrough discoveries of genomics and molecular biology. Now an increasing body of literature is dealing with the problem of translating promises into actual clinical practices and health outcomes. Several challenges have been identified: external validation and effectiveness, collecting large data repositories and building adequate IT infrastructures, gaining clinicians’ acceptance, adapting regulatory frameworks, securing adequate coverage from health insurances, establishing cost-effectiveness of new therapies, avoiding inequality of access, devising adequate models of consent, confidentiality and disclosure, educating the public and supporting patients’ decision making. The demands of these challenges have generated different responses. I consider two different strategies, which I label respectively the expansionist and the deflationary. The expansionist strategy accepts the challenge of translation and integration and often recast the overarching goal in terms of Personalized Healthcare, which is understood more broadly and sees the person not in merely biological terms. The deflationist strategy instead is especially concerned to focus on biomedical research (and distance itself from the more visionary versions of PM emerged in popular literature) and attempts to limit its ambition to a better stratification of diagnosis, therapies and disease taxonomy, often preferring the more modest label of Precision Medicine. These strategies have relevant differences for the Ethical, Legal and Social aspects of Personalised medicine. I compare how the impact of the two strategies on the framing of issues about equity of access and distribution of resources. Genomic sequencing in medical genetics: research and clinical practice Kristin Solum Steinsbekk Department of Public Health and General Practice, Norwegian University of Science and Technology- NTNU

Abstract

Over the past decade, exome or whole genome sequencing (genome sequencing) have evolved into important tools within biomedical research. There are large visions and hopes attached to the use of

http://www.nokut.no/en/Facts-and-statistics/The-Norwegian-Educational-System/The-Norwegian-qualifications-framework/

these technologies within the health care setting seen especially when personalized or precision medicine are promoted. Right now, we see a transfer of this technology from research into clinical settings especially within the specialty of Medical Genetics. An imminent challenge here is how to define, how to separate out, which parts of genome sequencing within the health care setting needs to be classified as research and which is business a as usual, part of normal clinical practice. At first glance, it looks like almost all genome sequencing within medical genetics could be defined as research. Even when genome sequencing is used to explore and find a diagnosis for an individual patient. If this is correct, there are several issues at stake for the clinical practice, for the patients, for research and for research participants. The important question that needs to be addressed right now is: When does activities within medical genetics need to be defined as research and thereby regulated by laws and guidelines pertaining to medical research? In this presentation, I will describe why it appears to be difficult to separate research from clinical practice when genome sequencing is used in medical genetics. Then I will highlight some of the issues at stake when activities that formerly have been classified as clinical practice now might be deemed as research. Finally, I claim that it is possible to lessen or even solve such challenges by analyzing two issues. One is to identify the differences in the intensions when genome sequencing is used in clinical practice versus in biomedical research. The other is to look at the protection an individual needs whether she is a patient or a research participant when their genomes are sequenced. Democratizing access to personalized medicine: challenges and opportunities Isabelle Budin-Ljøsne Centre for Medical Ethics, University of Oslo

Abstract

Personalized medicine is a medical approach which aims to tailor prevention, diagnostic and medical treatment to the molecular and genetic characteristics of the individual patient. For the last two years, I have taken full advantage of my participation in multidisciplinary European and international networks to investigate the views of experts regarding challenges to the delivery of personalized medicine to people, steps that should be taken, and tools that should be implemented to facilitate such delivery. The results of this research show that there are significant structural, financial, organizational and societal challenges that may delay or impede the equitable delivery of personalized medicine to people. Engagement strategies are seen as important tools to address some of these challenges. However, strong incentives and guidelines at political/societal level will also be needed to enable broad, democratic access to personalized medicine. In this presentation, I will discuss the extent to which a multidisciplinary consultation process is helpful to support ELSA research, and reflect upon its success criteria and limitations.

Parallel Session III A: Translating RRI Tuesday 1500-1630 Løvstakken. Chair: Bjørn Hofmann

The distribution of responsibilities in the research and innovation systems Ellen-Marie Forsberg Research Group on Responsible Innovation, AFI, Oslo and Akershus University College

Abstract

Research and innovation is embedded in a complex environment of institutions and infrastructures. When discussing what Responsible Research and Innovation (RRI) means in practice it is crucial to consider this complexity. Targeting only one or a few agents in the larger system runs the risk of being ineffective. However, the institutions that form parts of the different innovation systems are characterised by unique structures, cultures and governance contexts influencing how RRI dimensions may apply to them, or what responsibilities they may take. When seeking to support and strengthen the focus on RRI in these institutions, an understanding of such structures, cultures and governance contexts are crucial. In this presentation I will outline work we have done, and aim to do, in the HiOA Research Group on Responsible Innovation, on the topics of standardisation, patenting, assessment, funding, purchasing and management of research and innovation. ´Responsible Research´ versus ´Good Science´? The conceptual and practical barriers for the integration of responsible research and innovation in the practice of nanosafety research Lilian van Hove and Fern Wickson GenØk – Centre for Biosafety

Abstract

In recent years, responsible approaches to guide research and innovation – including the development of nanotechnology and nanoscience – have increased. This is reflected in the growing amount of national and international policy guidelines, calls and projects on ‘Responsible Research and Innovation’ (RRI) for the governance of new and emerging technologies, as well as the increased number of projects and publications on RRI within international scholarship. Due to the widespread uptake of RRI within nanotechnology development and policy, combined with the emphasis in the RRI literature on the responsibility of the individual – and particularly individual scientists - it is interesting to explore how responsibility and RRI are integrated into the practices of nanosafety researchers. This presentation will detail the outcomes of a recent empirical study on RRI in five different Scandinavian nanosafety laboratories. The presentation will describe a range of conceptual and practical barriers identified as currently hindering a fruitful integration and effective contribution of RRI in the practice of nanosafety research. On the basis of this research, we argue that both individual and institutional changes are required if RRI, as currently being imagined and promoted by policy makers and science and technology scholars, is to be integrated into the practice of scientific research. Critical of the focus of much current RRI literature and policy on the responsibility of individual scientists, we conclude by demonstrating that in order for RRI as theoretical conceived to develop fruitfully in practice, the broader conceptual and institutional barriers need to be better understood and overcome.

New enactments of responsibility in contemporary modes of governmentality in emerging technologies Heidrun Åm Centre for Technology and Society, Department for Interdisciplinary Studies of Culture, NTNU

Abstract

Recent developments in the governance of science and technology represent increased demands for self-regulation with respect to responsibility in research and development. This raises questions regarding the up-take of these visions and the capability of scientists and innovators to meet these demands, including their ability to enact responsibility in their research and innovation practices: do new forms of responsibility emerge? To answer this question, we studied comparatively a set of research communities and start-up companies in the biotechnology and nanotechnology fields in Norway through 37 interviews. By drawing on Foucault’s concept of governmentality, we address the disciplining of technoscientists. Governance efforts, like legal measures and ethics committees, may affect governmentality as may policy discourses about responsibility and sustainability and discourses of excellence or commodification. The interviews show that genetic medicine—in particular family-based genetic research—triggers very concrete issues that differ from the abstract ELSA concerns articulated with respect to biobanks, or the non-existing concerns in the basic research of emerging technologies such as nanomedicine. As a consequence, ethics becomes a contemporary mode of governmentality integral to the co-production of genetic medicine. In this field, researchers enact responsibility both by clinching to strict technocratic rules, actively demanding regulations, and by caring for the research subjects. REC’s evaluation of applications concerning genome sequencing

Parallel Session III B: Stakeholder engagement in biotechnology Tuesday 1500-1630 Ulriken. Chair: Mathias Kaiser

Stakeholders’ perception on sustainability, ethical and social aspects of genetically modified potato Frøydis Gillund, GenØk – Centre for Biosafety Audrun Utskarpen, The Norwegian Biotechnology Advisory Board Kate Millar, University of Nottingham Angelika Hilbeck, Swiss Federal Institute of Technology Anne I Myhr, GenØk – Centre for Biosafety Keywords: genetically modified late blight resistant potato, ethical, social and sustainability aspects, stakeholder engagement, risk assessment

Abstract

Genetically modified (GM) crops continues to generate significant controversy. Regularly frameworks are typically limited to an assessment of physical risk to human health and the environment, and do not sufficiently address the broader range of concerns that these agricultural biotechnologies raise. Policy-makers, both within the EU and internationally, are increasingly recognizing that serious changes to governance of agricultural biotechnologies are needed. Norway, with its Gene Technology Act (1993), remains a pioneer in this respect, as this was the first Act was to require an assessment of benefit society, ethical justifiability and contribution to sustainable development. However, the nature of and practical steps for these assessments are still not very well defined, which clearly limits the practical implementation of the Act.

Using the case of GM potato with late blight resistance, we describe practical examples of up-stream deliberative exercises that were organized to provide insights to policy-makers on issues that are relevant when assessing sustainability, social and ethical aspects of this particular GM plant. If successful, this type of GM potato may result in a reduction of fungicide applications to control the late blight disease to the benefit of both farmers and the environment. As such, it is the first example of a GM plant that has the potential to solve a serious problem for Norwegian farmers. We present the results from three workshops involving Norwegian stakeholders. The overall aim of two of the workshops was to identify conditions that this type of GM potato ought to satisfy in order to contribute to sustainable development. The third workshop involved a new group of stakeholders and intended to explore social and ethical issues in relation to the cultivation of this type of GM potato more broadly. A broad range of issues were raised and similar topics were discussed in all three workshops. Among them, considerations such as corporate control over genes and seed markets, transparency and openness during product development and risk assessment processes, opportunities for independent research and consumers’ thrust and rights were recognized as some of the most important issues. Norwegian consumer and farmer’ attitudes to GMOs in food production: continuity and change Reidar Almås and Reidun Heggem Centre for Rural Research, Trondheim

Abstract

European and Norwegian consumers and farmers have throughout the last 20 years been sceptical of genetically modified foods. The objections are justified primarily in ethical, economic and environmental conditions. These aspects are linked in various ways and studies have confirmed that the interweaving of ethics, utility and environment showed that risk communication about genetic engineering in the food sector occurred in a complex network of social relations. These relations are changing over time, as is the gene technology itself and product development within the industry. Social science research shows that consumers perceive that there are both risks and benefits associated with genetically modified food. The precautionary principle's strength among consumers and farmers has been conditional on a number of circumstances surrounding the decision situation, in particular the consequences of the natural environment, animal and human health. Nevertheless, it seems that the Norwegians' scepticism is beginning to decline. A study conducted by the Norwegian Food Safety Authority showed that there were fewer who were concerned about foods made from genetically modified ingredients in 2007 than in 1997. Norwegian data from the Eurobarometer show that there has been an increase in the proportion of Norwegian "optimists" with regard to the expectations of the use of modern biotechnology. A nearby interpretation could be that this shows great confidence in a well-established regulation regime in this country. Chances to ingest food with unfortunate genetically modified ingredients are considered to be small, and for that reason little to worry about. In this paper we explore two issues.

1. Have consumer attitudes to GMOs in food production changed the last two decade, and if so: How and Why?

2. Have farmers' attitudes to GMOs in food production changed in the same period, and if so: How and Why?

Engaging stakeholders in biotechnology patenting; a post-normal analysis of the European patent system Anders Braarud Hanssen Centre for Welfare and Labour Research, Oslo and Akershus University Collage

Abstract

Post normal science (PNS) is a notion launched by Silvio Funtowicz and Jerry Ravets (1991) to describe challenges in science policy and scientific advice concerning science characterized by high uncertainties and high stakes. In this presentation I will show how this notion can be fruitful for also analyzing challenges related to patenting in biotechnology. Building on the concept of post-normal science (PNS) I will first show how and to what degree biotechnologies may be seen as post-normal, identified as a science arena where facts are uncertain, values are in dispute, stakes are high (risk), and decisions urgent (immediacy of societal impact) (Funtowicz and Ravetz, 1991). I will then argue that the European patent system is unable to address the range of post-normal features of biotechnological inventions. This leads to the following tensions in biopatenting: a) Patent rights are established in fields of basic science where the difference between scientific fact and theory is vague and uncertain. This may be indicated by the diffusion of the difference between central concepts in patent law, such as the criteria for invention and discovery. b) Moral controversies in biopatenting are numerous and complex. c) biopatenting generates broad legal, environmental, economic, social and ethical uncertainties. Based on PNS, I will argue that the concept of ‘extended peer community’, as practices of stakeholder engagement, can be an important countermeasure to these tensions.

Parallel Session III C Genetics, reductionism and justice Tuesday 1500-1630 Lyderhorn. Chair: May Thorseth

Molecular categorizations of cancer Gry Oftedal Department of Philosophy, Classics, History of Art and Ideas, University of Oslo

Abstract

Diseases are increasingly researched on the molecular scale and redescribed and explained by way of molecular mechanisms. What before was considered one or a few diseases, are split into a multitude of diseases or disease subtypes in a fine-grained fashion. Cancer is traditionally classified, to the site of cancer origin, to stage and grade, and to histopathological features. There is an increasing focus in contemporary cancer research on categorizing cancer types and subtypes according to molecular level features such as molecular markers, receptor variations, mutations, and gene expressions. The shift is often described as an answer to the need of better instruments for diagnosis, prognosis and treatment. It is also seen as reflecting the quest for a deeper understanding of what cancer is, how it comes about and how it develops. This paper considers the tension between an instrumental and an explanatory basis for molecular categorizations. A central topic is that molecular categorizations answer to a specific focus in cancer research not accounting for the larger picture of cancer complexity. The classifications do reflect molecular differences and similarities between cancer cells, but the chosen categories are mixed and varying when it comes to their classification basis. Not only are there many different categorizations that answers to different goals and that cross-cut each-other, but individual molecular categorization schemes are internally heterogenous and disproportionate with respect to their categorization base. This diversity reflects the heterogeneity of cancer causation but also the heterogeneity of targeted treatments and of classification goals. I describe an existing conflict between many researchers’ expressed goals and ambitions for molecular

classifications and what these classifications actually can do. It is important to put a focus on the intricate web of explanatory and instrumental features of cancer research and how this combination drives the research in a particular direction The risks of individualising risk Vidar Halgunset Department of Philosophy and Religious Studies, NTNU

Abstract

Genomics is believed to become crucial in personal healthcare. Knowing one’s predispositions allows earlier interventions or lifestyle adjustments so as to avoid predictable dangers. While knowing one’s risks can be beneficial, sceptics claim the benefits tend to be exaggerated (Welch 2011). A further but largely neglected reason for caution is philosophical confusions around the key notion of individual risk. Some forms of individualising risk are trivially unproblematic. But at times being-at-risk,particularly when genetically grounded, is conceived as a personal characteristic. This happens in two steps. First, risk is individualised as clinical significance is derived from epidemiological data. Second, risk becomes ontologised as risk is thought to signify an inbetween health status, between the sick and the healthy (Scott et al 2005). Thus, genetic risk is construed as something an individual has, a fallacy committed by patients (Bharadwaj et al 2006), physicians (Edwards & Prior 1997) and researchers (e.g. Scherer et al 2013) alike. The methodological problems with individualising probabilistic notions are well known; what still awaits an adequate analysis is the ontologisation of risk. I argue that several misconceptions contribute in making genetic risks appear exceptional and different in kind from other risks. When risk is grounded in genetics, false inferences from popular ideas and facts about genes—that they are unique, embodied and fundamental in determining our biology—make ontologising risk particularly easy and insidious. Of obvious importance to clinical practice, disclosing these easy-to-make fallacies is also a contribution to the on-going discussions on medicalisation and over-diagnosis. The missing link in Access and Benefit Sharing – the relationship between a Genetic Resource and the product Morten Walløe Tvedt,1 Vincent Eijsink,2 Ida Helene Steen,3 Roger Strand,4 and G. Kristin Rosendal

Abstract

This paper discusses a topic which is under-discussed in the debate on how to make access and benefit sharing a functional legal system. It concerns the linkage between the genetic resources and the product in the market which as is the basis for establishing the benefit-sharing obligations as a core question for making ABS work.

1Senior research fellow, Fridtjof Nansen Institute. Tvedt has published extensively in the area of biological

resources law and intellectual property in recent years (see www.fni.no for a complete list of publications). This

article is a product of the research project NorZymeD funded by the Research Council of Norway, project

number 221568/O30. He may be contacted at: mwt@fni.no or by post to Fridtjof Nansen Institute, P.O.Box 326,

1326 Lysaker, Norway 2Professor, Norwegian University of Life Sciences, Ås, Norway, Universitetstunet 3, 1430 Ås.

vincent.eijsink@nmbu.no 3Researcher, Department of Biology, Centre for Geobiology, University of Bergen, Bergen, Norway. P.O. Box

7803, N-5020 Bergen, Norway. Ida.steen@uib.no 4Professor, Centre for the Study of the Sciences and the Humanities, University of Bergen, Bergen, Norway.

P.O. Box 7805, N-5020 Bergen, Norway. roger.strand@svt.uib.no

http://www.fni.no/mailto:mwt@fni.nomailto:vincent.eijsink@nmbu.nomailto:roger.strand@svt.uib.no

The paper is a cross-disciplinary one combining law, with philosophy and biotechnology, and aims at show-casing the potential for including ELSA-components into bio-technology projects. The approach is to look at the manner which the Norwegian access regulation takes and discusses this in the light of one on-going research project. The research approach is to contrast this proposed manner to resolve this linkage in the draft regulation with one concrete example in an ongoing research project searching for industrial enzymes. The article also discusses the potential to generalize from this ongoing project. The project team is composed of five different academic backgrounds spanning from ethics, law, political science combined with biotechnologists and molecular scientists. This analysis brings forward a true interdisciplinary study bringing ethics, law and societal together with science in biotechnolo

Wednesday 13. April

Parallel Session IV A: Ethos, visions and scientific practice Wedensday 1130-1230 Løvstakken. Chair: May Thorseth

Reflections on premature intuitions Lars Ursin Department of Public Health and General Practice, NTNU

Abstract

Given the same chance of survival and risk of impairment, surveys show that medical doctors would rather save a seven year old child harmed in an accident, than a premature baby born after 24 weeks of gestation. This preference is global and systematic. Moreover, the medical doctors would be more reluctant to start life-saving treatment of a premature baby that was their own, than if it was not. How can these preferences be explained? Do they point to a justifiable intuition that should form the basis of clinical decisions? Or do they point to intuitions that dissolve if confronted with sound ethical reflection? In this presentation I will dwell on these questions, and propose a way ahead. Interviewing scientists as a part of ELSA projects: A scheme for elaborating the ethos of scientific practices Sophia Efstathiou Department of Philosophy and Religious studies, NTNU

Abstract The paper presents a format of questions used to interview science stakeholders as part of an ELSA project to study the development of marine-based biotechnology. The questions were structured to identify envisioned benefits and risks associated with a research project in question. We present this interviewing scheme in relation to an understandings of the ethos of science as pertaining to its practices (habits) and articulated character or goals and assess how far interviewing gets in establishing that. We present some results from this style of interviewing and discuss its use in the context of ELSA research.

Parallel Session IV B Art and ELSA engagement Wednesday 1130-1230 Ulriken. Chair: Mathias Kaiser

Art – Science Projects as ELSA Engagement Merete Lie Department of Interdisciplinary Studies of Culture, Norwegian University of Science and Technology- NTNU

Abstract

The paper will address innovative practices and future visions of biotechnology across art and science in order to illuminate ethical, legal and social aspects of emerging technologies. Emerging technologies have always caught the interest of artists, and the new biotechnologies are no exception (e. g. Anker and Nelkin 2003, Myers 2015). Hybrid institutions fostering collaboration between artists and scientists have increased during the last years and resulted in innovative approaches to create public engagement with emerging technologies. Initiators such as the growing biohacking communities are aiming at entrepreneurship as well as public access to the tools and knowledge of biotechnologies and may be seen as cultural brokers mediating between science and the public. An example is the work of artist Heather Dewey-Hagborg, creating portraits based on DNA from biological material left in public places. The artist has a background in Information Arts and Telecommunications and cooperates with a molecular biologist. The artist states that her work is ‘an artistic provocation about privacy, surveillance and our biotechnical and legal future’. The paper will include current examples of sci-art projects, discuss how sci-art projects frame and approach new technologies, and how they raise ethical dilemmas directly as well as indirectly. The Ethics of Fringe Biotechnology: Art and Biohacking from an ELSA Perspective Nora S. Vaage Centre for the Study of the Science and Humanities, University of Bergen

Abstract

As the bio(techno)sciences are becoming more approachable due to open source sharing of information, cheaper equipment, and standardisation of materials, an increasing number of artists, designers, and hackers use their methods for alternative purposes. What ethical issues arise with the emergence of these “fringe biotechnologists”, and how should we relate to them? This was one of the questions posed in my PhD thesis, delivered February 2016. In the proposed presentation, I will discuss how scholarly considerations of “biohacking” have so far focused largely on questions of biosecurity and biosafety, whereas in “bioart”, numerous other ethical issues have been discussed. This, I argue, is informed by the perception of “hacking” as potentially disruptive, and of “art” as a non-utilitarian (although also potentially provocative) practice. Departing from this stance, I will discuss the hazards and promises of potential ethical frameworks for these actors.