There is a growing body of literature that has sought to undermine systems of ethical regulation, and governance more generally, within the social sciences. In this paper, we argue that any general claim for a system of research ethics governance in social research depends on clarifying the nature of the stake that society has in research. We show that certain accounts of this stake—protecting researchers’ freedoms; ensuring accountability for resources; safeguarding welfare; and supporting democracy—raise relevant ethical considerations that are reasonably (...) contested. However, these accounts cannot underpin a general claim in favour of, or against, a system of research ethics governance. Instead, we defend governance in social research on the grounds that research, as an institutionalised form of enquiry, is a constitutive element of human flourishing, and that society ought to be concerned with the flourishing of its members. We conclude by considering the governance arrangements that follow from, and are justified by, our arguments. (shrink)

Bioethics is a practically oriented discipline that developed to address pressing ethical issues arising from developments in the life sciences. Given this inherent practical bent, some form of advocacy or activism seems inherent to the nature of bioethics. However, there are potential tensions between being a bioethics activist, and academic ideals. In academic bioethics, scholarship involves reflection, rigour and the embrace of complexity and uncertainty. These values of scholarship seem to be in tension with being an activist, which requires pragmatism, (...) simplicity, certainty and, above all, action. In this paper I explore this apparent dichotomy, using the case example of my own involvement in international efforts to end forced organ harvesting from prisoners of conscience in China. I conclude that these tensions can be managed and that academic bioethics requires a willingness to be activist. (shrink)

Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for (...) the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement. (shrink)

In biomedical research lack of trust is seen as a great threat that can severely jeopardise the whole biomedical research enterprise. Practices, such as informed consent, and also the administrative and regulatory oversight of research in the form of research ethics committees and Institutional Review Boards, are established to ensure the protection of future research subjects and, at the same time, restore public trust in biomedical research. Empirical research also testifies to the role of trust as one of the decisive (...) factors in research participation and lack of trust as a barrier for consenting to research. However, what is often missing is a clear definition of trust. This paper seeks to address this gap. It starts with a conceptual analysis of the term trust. It compares trust with two other related terms, those of reliance and trustworthiness, and offers a defence of Baier’s attribute of ‘good will’ a basic characteristic of trust. It, then, proceeds to consider trust in the context of biomedical research by examining two questions: First, is trust necessary in biomedical research?; and second, do increases in regulatory oversight of biomedical research also increase trust in the field? This paper argues that regulatory oversight is important for increasing reliance in biomedical research, but it does not improve trust, which remains important for biomedical research. It finishes by pointing at professional integrity as a way of promoting trust and trustworthiness in this field. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)

This paper discusses the conditions for legitimate expert arrangements within a democratic order and from a deliberative systems approach. It is argued that standard objections against the political role of experts are flawed or ill-conceived. The problem that confronts us instead is primarily one of truth-sensitive institutional design: Which mechanisms can contribute to ensuring that experts are really experts and that they use their competencies in the right way? The paper outlines a set of such mechanisms. However, the challenge exceeds (...) that of producing epistemically optimal expert deliberations because a deliberative political system must also fulfil the ethical and democratic requirements of respect and inclusion. Yet, epistemic concerns justify expertise arrangements in the first place, and measures taken to make the use of expertise compatible with these requirements have to balance the potential rewards from expertise against potential deliberative costs. In the final part of the paper, the regulatory framework of a best practice expert advice system is tentatively analysed to illustrate the applicability and critical potential of our approach. (shrink)

This is the first publication of these ideas in book form. 'It is a rare treat--important, original philosophy that is also a pleasure to read.

This article sketches a taxonomy of the activities in which bioethics academics engage, including activities that may make their own research more impactful, from little or no engagement outside academia to activism or extreme activism. This taxonomy, the first of its kind, may be useful in determining what obligations bioethics academics have in relation to activism and activities that fall short of activism.

Volume 20, Issue 4, May 2020, Page 71-73.

Translational research in medicine requires researchers to identify the steps to transfer basic scientific discoveries from laboratory benches to bedside decision-making, and eventually into clinical practice. On a parallel track, philosophical work in ethics has not been obliged to identify the steps to translate theoretical conclusions into adequate practice. The medical ethicist A. Cribb suggested some years ago that it is now time to debate ‘the business of translational’ in medical ethics. Despite the very interesting and useful perspective on the (...) field of medical ethics launched by Cribb, the debate is still missing. In this paper, I take up Cribb’s invitation and discuss further analytic distinctions needed to base an ethics aiming to translate between theory and practice. (shrink)

Denne artikkelen tar utgangspunkt i et skille mellom samfunnsstrukturer som avgrenser legers skjønnsmessige utfoldelse på den ene siden, og profesjonens tilrettelegging for kultiveringen av erkjennelsesmessige ferdigheter på den annen. Ved å videreføre H. Grimen og A. Molanders anvendelse av S.E. Toulmins modell for praktisk resonnering i en klinisk kontekst redegjør jeg for legeskjønnets multidimensjonale, epistemiske struktur. Gjennomgangen viser hvordan skjønnsanvendelse i legerollen kan analyseres i henhold til en fagteknisk, en distributiv og en relasjonell dimensjon. Mot denne bakgrunnen diskuterer jeg så (...) spenninger som oppstår i skjæringspunktet mellom strukturering og kultivering av skjønnets ulike dimensjoner. Diskusjonen tydeliggjør at den medisinske profesjonen ikke kan betraktes som en selvtilstrekkelig premissleverandør når det gjelder å sikre adekvat kultivering av medlemmenes skjønnsutøvelse i en klinisk kontekst. Ved å synliggjøre og vektlegge de relevante profesjonseksterne bidragene i profesjonens pågående selvregulering kan befolkningens berettigete tillit til profesjonen styrkes ytterligere.Nøkkelord: strukturelt skjønn, epistemisk skjønn, profesjon, selvregulering, tillitEnglish summary: In Between Structures of Society and Profession: On Delimitation, Cultivation and Premises for Adequately Exercising Judgment in the Role as PhysicianThe point of departure of this article is a distinction between societal structures that delimit the discretion of the physician on the one hand and the profession's arrangements for the cultivation of the physician's judgment on the other. By developing H. Grimen and A. Molander's application of S.E. Toulmin's model for practical reasoning in a clinical context, the multi-dimensional epistemic structure of the physician's judgment in terms of technical, distributive, and relational judgment is accounted for. Against this backdrop, tensions emerging in the intersection between delimitation and cultivation of professional judgment in its various dimensions are discussed. The discussion clarifies that the medical profession is not a self-sufficient provider when it comes to ensuring an adequate cultivation of its members' judgment in a clinical context. It is argued that by emphasising and implementing the relevant external contributions to the profession's ongoing self-regulation, the public's justified trust in the medical profession can be strengthened. (shrink)

In this article we address the social value of bioethics research and show how a participatory approach can achieve social impact for a wide audience of stakeholders, involving them in a process of joint moral learning. Participatory bioethics recognizes that research co-produced with stakeholders is more likely to have impact on healthcare practice. These approaches aim to engage multiple stakeholders and interested partners throughout the whole research process, including the framing of ideas and research questions, so that outcomes are tailored (...) to the interests and context, and the type of impact stakeholders envisage. There is an emphasis on realizing social change through the conduct of the research, and it is believed that the engagement of stakeholders in the research process will promote their intrinsic motivation to change their practice. Another distinctive feature of participatory bioethics research is that its central normative commitment is to reflection and dialogue, not to a particular substantive ethical approach. In reflection and dialogue there is an emphasis on inclusion and the co-production of knowledge. Furthermore, empirical and normative research are combined, and there is a deliberate attempt to give voice to otherwise marginalized positions. This provides a model of social impact which is relevant not only for bioethics research, but also for other areas of health care research. We will show the merits of a participatory approach to bioethics research with a case example. It concerns the reduction of coercion and in particular seclusion in Dutch mental healthcare. (shrink)

In this book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: what is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels' theory has implications for national and global health policy: can we meet health needs fairly in ageing societies? Or protect health in the workplace while respecting individual liberty? Or (...) meet professional obligations and obligations of justice without conflict? When is an effort to reduce health disparities, or to set priorities in realising a human right to health, fair? What do richer, healthier societies owe poorer, sicker societies? Just Health: Meeting Health Needs Fairly explores the many ways that social justice is good for the health of populations in developed and developing countries. (shrink)

As we approach the end of the twentieth century, the ways in which knowledge--scientific, social, and cultural--is produced are undergoing fundamental changes. In The New Production of Knowledge, a distinguished group of authors analyze these changes as marking the transition from established institutions, disciplines, practices, and policies to a new mode of knowledge production. Identifying such elements as reflexivity, transdisciplinarity, and heterogeneity within this new mode, the authors consider their impact and interplay with the role of knowledge in social relations. (...) While the knowledge produced by research and development in science and technology is accorded central focus, the authors also outline the changing dimensions of social scientific and humanities knowledge and the relations between the production of knowledge and its dissemination through education. Placing science policy and scientific knowledge within the broader context of contemporary society, this book will be essential reading for all those concerned with the changing nature of knowledge, with the social study of science, with educational systems, and with the correlation between research and development and social, economic, and technological development. "Thought-provoking in its identification of issues that are global in scope; for policy makers in higher education, government, or the commercial sector." --Choice "By their insightful identification of the recent social transformation of knowledge production, the authors have been able to assert new imperatives for policy institutions. The lessons of the book are deep." --Alexis Jacquemin, Universite Catholique de Louvain and Advisor, Foreign Studies Unit, European Commission "Should we celebrate the emergence of a 'post-academic' mode of postmodern knowledge production of the post-industrial society of the 21st Century? Or should we turn away from it with increasing fear and loathing as we also uncover its contradictions. A generation of enthusiasts and/or critics will be indebted to the team of authors for exposing so forcefully the intimate connections between all the cognitive, educational, organizational, and commercial changes that are together revolutionizing the sciences, the technologies, and the humanities. This book will surely spark off a vigorous and fruitful debate about the meaning and purpose of knowledge in our culture." --Professor John Ziman, (Wendy, Janey at Ltd. is going to provide affiliation. Contact if you don't hear from her.) "Jointly authored by a team of distinguished scholars spanning a number of disciplines, The New Production of Knowledge maps the changes in the mode of knowledge production and the global impact of such transformations. . . . The authors succeed . . . at sketching out, in very large strokes, the emerging trends in knowledge production and their implications for future society. The macro focus of the book is a welcome change from the micro obsession of most sociologists of science, who have pretty much deconstructed institutions and even scientific knowledge out of existence." --Contemporary Sociology "This book is a timely contribution to current discussion on the breakdown of and need to renegotiate the social contract between science and society that Vannevar Bush and likeminded architects of science policy constructed immediately after World War II. It goes far beyond the usual scattering of fragmentary insights into changing institutional landscapes, cognitive structures, or quality control mechanisms of present day science, and their linkages with society at large. Tapping a wide variety of sources, the authors provide a coherent picture of important new characteristics that, taken altogether, fundamentally challenge our traditional notions of what academic research is all about. This well-founded analysis of the social redistribution of knowledge and its associated power patterns helps articulate what otherwise tends to remain an--albeit widespread--intuition. Unless they adapt to the new situation, universities in the future will find the centers of gravity of knowledge production moving even further beyond their ken. Knowledge of the social and cognitive dynamics of science in research is much needed as a basis of science and technology policymaking. The New Production of Knowledge does a lot to fill this gap. Another unique feature is its discussion of the humanities, which are usually left out in works coming out of the social studies of science." --Aant Elzinga, University od Goteborg. (shrink)

Why has autonomy been a leading idea in philosophical writing on bioethics, and why has trust been marginal? In this important book, Onora O'Neill suggests that the conceptions of individual autonomy so widely relied on in bioethics are philosophically and ethically inadequate, and that they undermine rather than support relations of trust. She shows how Kant's non-individualistic view of autonomy provides a stronger basis for an approach to medicine, science and biotechnology, and does not marginalize untrustworthiness, while also explaining why (...) trustworthy individuals and institutions are often undeservingly mistrusted. Her arguments are illustrated with issues raised by practices such as the use of genetic information by the police or insurers, research using human tissues, uses of new reproductive technologies, and media practices for reporting on medicine, science and technology. Autonomy and Trust in Bioethics will appeal to a wide range of readers in ethics, bioethics and related disciplines. (shrink)