“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of (...) ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge. (shrink)

In attempting to provide protection to individuals and communities, childhood immunization has benefits that far outweigh disease risks. However, some parents decide not to immunize their children with some or all vaccines for reasons including lack of trust in governments, health professionals, and vaccine manufacturers. This article employs a theoretical analysis of trust and distrust to explore how twenty-seven parents with a history of vaccine rejection in two Australian cities view the expert systems central to vaccination policy and practice. Our (...) data show how perceptions of the profit motive generate distrust in the expert systems pertaining to vaccination. Our participants perceived that pharmaceutical companies had a pernicious influence over the systems driving vaccination: research, health professionals, and government. Accordingly, they saw vaccine recommendations in conflict with the interests of their child and “the system” underscored by malign intent, even if individual representatives of this system were not equally tainted. This perspective was common to parents who declined all vaccines and those who accepted some. We regard the differences between these parents—and indeed the differences between vaccine decliners and those whose Western medical epistemology informs reflexive trust—as arising from the internalization of countering views, which facilitates nuance. (shrink)

Is philosophy like plumbing? I have made this comparison a number of times when I have wanted to stress that philosophising is not just grand and elegant and difficult, but is also needed. It is not optional. The idea has caused mild surprise, and has sometimes been thought rather undignified. The question of dignity is a very interesting one, and I shall come back to it at the end of this article. But first, I would like to work the comparison (...) out a bit more fully. (shrink)

In 1986, philosopher-bioethicist Samuel Gorovitz published an essay entitled “Baiting Bioethics,” in which he reported on various criticisms of bioethics that were “in print, or voiced in and around … the field” at that time, and set forth his assessment of their legitimacy. He gave detailed attention to what he judged to be the particularly fierce and “irresponsible attacks” on “the moral integrity” and soundness of bioethics contained in two papers: “Getting Ethics” by philosopher William Bennett and “Medical Morality Is (...) Not Bioethics,” coauthored by us. Gorovitz attributed some of the criticisms that bioethics was eliciting to the fact that this new, rapidly rising, and increasingly visible field had brought “scholars and practitioners together who otherwise would have little exposure to one another's disciplines. Their interactions are mutually enriching at times,” he declared, “but mutually baffling and even infuriating at other times.” In this latter regard, he suggested that “perhaps” Fox and Swazey's characterization of bioethics in the article he dissected “reflects a general revulsion at endeavors they see as inadequately like the social sciences or insufficiently respectful of them.” He went on to say that despite his objections to our “complaints” about bioethics—especially to our claim that “autonomy [had] been an unduly emphasized value” in the field—he had “a lingering sense” that there might be “a grain of truth” in them. Gorovitz ended his essay with an affirmation about the “benefit” that bioethics can derive from “responsible” and even from “irresponsible” criticism. “The unexamined discipline invites the philosopher's critical scrutiny no less than the unexamined life,” he aphoristically concluded. a. (shrink)

Anthropologists and sociologists offer numerous critiques of bioethics. Social scientists criticize bioethicists for their arm-chair philosophizing and socially ungrounded pontificating, offering philosophical abstractions in response to particular instances of suffering, making all-encompassing universalistic claims that fail to acknowledge cultural differences, fostering individualism and neglecting the importance of families and communities, and insinuating themselves within the “belly” of biomedicine. Although numerous aspects of bioethics warrant critique and reform, all too frequently social scientists offer ungrounded, exaggerated criticisms of bioethics. Anthropological and sociological (...) critiques of bioethics are hampered by the tendency to equate bioethics with clinical ethics and moral theory in bioethics with principlist bioethics. Also, social scientists neglect the role of bioethicists in addressing organizational ethics and other “macro-social” concerns. If anthropologists and sociologists want to provide informed critiques of bioethics they need to draw upon research methods from their own fields and develop richer, more informed analyses of what bioethicists say and do in particular social settings. (shrink)

There are competing accounts of the birth of bioethics. Despite the differences among them, these accounts share the claim that bioethics was not born in a single disciplinary home or in a single social space, but in numerous, including hospitals, doctors' offices, research laboratories, courtrooms, medical schools, churches and synagogues, and philosophy classrooms. This essay considers the interdisciplinarity of bioethics and the contribution of new disciplines to bioethics. It also explores the implications of interdisciplinarity for bioethics education. As bioethics develops, (...) it will be helpful to identify essential elements in the education of bioethicists and to distinguish between members of other disciplines who make important contributions to bioethics and bioethicists. (shrink)

Philosophers, particularly moral philosophers, are increasingly being involved in public decision‐making in areas which are seen to raise ethical issues. For example, Dame Mary Warnock chaired the ‘Committee of Inquiry into Human Fertilization and Embryology’ in the UK in 1982–4; the Philosophy Department at Auckland was commissioned by the Auckland Regional Authority to report on the ethical aspects of fluoridating the public water supply in 1990; and many of us are serving on ethics committees of various sorts. Not only are (...) philosophers actually being called on or consulted, but many of us would argue that a philosophical contribution in such areas is essential.The involvement of moral philosophers in public policy decisions raises a question of professional ethics, viz, what role should a philosopher's own moral perspective or judgements play in the advice s/he gives, or contribution s/he makes, to public decision‐making on ethical issues. Like most problems in professional ethics, this prompts reflection on the nature of the profession, and in particular on the expertise we take moral philosophy to offer. It also prompts reflection on how processes of public decision making in ethically problematic areas should be understood. I explore these issues in this paper. (shrink)

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)

The work of a bioethicist carries distinctive responsibilities. Alongside those of any worker, there are responsibilities associated with giving guidance to practitioners, policy makers and the public. In addition, bioethicists are professionally exposed to and required to identify situations of moral trouble, and as a result may find themselves choosing to work as advocates or activists, with responsibilities that are distinct from those generally acknowledged within academia. The requirement for bioethics to make normative judgements entails taking a stance, which means (...) there cannot be a sharp line between ‘academic’ or ‘objective’ bioethics, and advocacy/activism, but a continuum of bioethicists’ engagement and an associated continuum of responsibilities. (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)

BackgroundThis article explores the reasons in favour of revising and extending the current 14-day statutory limit to maintaining human embryos in culture. This limit is enshrined in law in over a dozen countries, including the United Kingdom. In two recently published studies, scientists have shown that embryos can be sustained in vitro for about 13 days after fertilisation. Positive reactions to these results have gone hand in hand with calls for revising the 14-day rule, which only allows embryo research until (...) the 14th day after fertilisation.Main textThe article explores the most prominent arguments in favour of and against the extension of the 14-day limit for conducting research on human embryos. It situates these arguments within the history of the 14-day limit. I start by discussing the history of the 14-day limit in the United Kingdom and the reasons behind the decision to opt for a compromise between competing moral views. I then analyse the arguments that those who are generally in favour of embryo research put forward in support of extending the 14-day rule, namely the argument of the beneficence of research and the argument of technical feasibility. I then show how these two arguments played a role in the recent approval of two novel techniques for the replacement of faulty mitochondrial DNA in the United Kingdom. Despite the popularity and widespread use of these arguments, I argue that they are ultimately problematic and should not be straightforwardly accepted. I end by making a case for respecting value pluralism in the context of embryo research, and I present two reasons in favour of respecting value pluralism: the argument of public trust and the argument of democracy.ConclusionI argue that 14-day limit for embryo research is not a valuable tool despite being a solution of compromise, but rather because of it. The importance of respecting value pluralism needs to be considered in any evaluation concerning a potential change to the 14-day rule. (shrink)

Now fully revised and updated, Bioethics: An Anthology, 3rd edition, contains a wealth of new material reflecting the latest developments. This definitive text brings together writings on an unparalleled range of key ethical issues, compellingly presented by internationally renowned scholars. The latest edition of this definitive one-volume collection, now updated to reflect the latest developments in the field Includes several new additions, including important historical readings and new contemporary material published since the release of the last edition in 2006 Thematically (...) organized around an unparalleled range of issues, including discussion of the moral status of embryos and fetuses, new genetics, neuroethics, life and death, resource allocation, organ donations, public health, AIDS, human and animal experimentation, genetic screening, and issues facing nurses Subjects are clearly and captivatingly discussed by globally distinguished bioethicists A detailed index allows the reader to find terms and topics not listed in the titles of the essays themselves. (shrink)