Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public (...) debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel. (shrink)

The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of ‘relational autonomy’ in particular have argued that people’s identities, needs, interests – and indeed autonomy – are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at (...) an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangibl... (shrink)

Self-reported data are regarded by medical researchers as invalid and less reliable than data produced by experts in clinical settings, yet individuals can increasingly contribute personal information to medical research through a variety of online platforms. In this article we examine this ‘participatory turn’ in healthcare research, which claims to challenge conventional delineations of what is valid and reliable for medical practice, by using aggregated self-reported experiences from patients and ‘pre-patients’ via the internet. We focus on 23andMe, a genetic testing (...) company that collects genetic material and self-reported information about disease from its customers. Integral to this research method are relations of trust embedded in the information exchange: trust in customers’ data; trust between researchers/company and research subjects; trust in genetics; trust in the machine. We examine the performative dimension of these trust relations, drawing on Shapin and Schaffer’s discussion of how material, literary and social technologies are used in research in order to establish trust. Our scepticism of the company’s motives for building trust with the self-reporting consumer forces us to consider our own motives. How does the use of customer data for research purposes by 23andMe differ from the research practices of social scientists, especially those who also study digital traces? By interrogating the use of self-reported data in the genetic testing context, we examine our ethical responsibilities in studying the digital selves of others using internet methods. How researchers trust data, how participants trust researchers, and how technologies are trusted are all important considerations in studying the social life of digital data. (shrink)

Conventional wisdom and commonsense morality tend to take the integrity of persons for granted. But for people in systematically unjust societies, self-respect and human dignity may prove to be impossible dreams.Susan Babbitt explores the implications of this insight, arguing that in the face of systemic injustice, individual and social rationality may require the transformation rather than the realization of deep-seated aims, interests, and values. In particular, under such conditions, she argues, the cultivation and ongoing exercise of moral imagination is (...) necessary to discover and defend a more humane social vision. Impossible Dreams is one of those rare books that fruitfully combines discourses that were previously largely separate: feminist and antiracist political theory, analytic ethics and philosophy of mind, and a wide range of non-philosophical literature on the lives of oppressed peoples around the world. It is both an object lesson in reaching across academic barriers and a demonstration of how the best of feminist philosophy can be in conversation with the best of “mainstream” philosophy—as well as affect the lives of real people. (shrink)

While parents have traditionally provided proxy consent for minors to participate in research, this has proven inadequate for adolescents who are mentally and emotionally capable of making their own decisions. Research has proven that even young children, and certainly most adolescents, are developmentally prepared to make such decisions for themselves. The author challenges the assumption that both consent and assent are static concepts, and proposes that a sliding scale of competence be created to ascertain the adolescent's comprehension of the proposed (...) research by shifting the burden of proof to those who believe a particular adolescent is unable to provide informed consent. (shrink)

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. (...) Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. (shrink)

Where research was once strictly confined to one laboratory or office, investigators now widely share and compare their plans, analyses, and results. With the advent of genomic knowledge, researchers are seeking to understand the genetics and genomics of complex human disease. They are combining their efforts into international consortia in order to take on problems that face individuals around the world, such as cancer and malaria — problems that are too large to solve by one country alone. These consortia bring (...) together diverse research groups from different parts of the world to focus on a common goal. Their projects may all focus on one disease or condition, but examine it from different perspectives and share the newly gained information with each other and the wider scientific community. (shrink)

Foucault’s remarks concerning psychoanalysis are ambivalent and even prima facie contra-dictory, at times lauding Freud and Lacan as anti-humanists, at others being severely criti-cal of their imbrication within psychiatric power. This has allowed a profusion of interpretations of his position, between so-called ‘Freudo-Foucauldians’ at one extreme and Foucauldians who condemn psychoanalysis as such at the other. In this article, I begin by surveying Foucault’s biographical and theoretical relationship to psychoanalysis and the sec-ondary scholarship on this relationship to date. I pay (...) particular attention to the discussion of the relationship in feminist scholarship and queer theory, and that by psychoanalytic thinkers, as well as attending to the particular focus in the secondary literature on Fou-cault’s late work and his relationship to the figure of Jacques Lacan. I conclude that Fou-cault’s attitude to psychoanalysis varies with context, and that some of his criticisms of psychoanalysis in part reflect an ignorance of the variety of psychoanalytic thought, partic-ularly in its Lacanian form. I thus argue that Foucault sometimes tended to overestimate the extent of the incompatibility of his approach with psychoanalytic ones and that there is ultimately no serious incompatibility there. Rather, psychoanalysis represents a substantively different mode of inquiry to Foucault’s work, which is neither straightforwardly ex-clusive nor inclusive of psychoanalytic insights. (shrink)

This article deals with the relationship between the thought of Michel Foucault and that of Axel Honneth, arguing in favour of the former against the latter. I begin by considering Honneth’s early engagement in The Critique of Power with Foucault’s thought. I rebut Honneth’s criticisms of Foucault here as a misreading, one which prevents Honneth from coming to grips with Foucault’s position and hence the challenge that it poses to Honneth’s project. I then move on to offer a Foucauldian critique (...) of Honneth’s own position, arguing for a Foucauldian alternative to Critical Theory. (shrink)

I offer a novel interdisciplinary approach to understanding the communicative task of listening, which is under-theorised compared to its more conspicuous counterpart, speech. By correlating a Rylean view of mental actions with a virtue ethical framework, I show listeners’ internal activity as a morally relevant feature of how they treat people. The listener employs a policy of responsiveness in managing the extent to which they allow a speaker's voice to be centred within their more effortful, engaged attention. A just listener's (...) policy of responsiveness avoids unwarrantedly dismissing speakers’ messages on the basis of peripheral attention alone. (shrink)

In this response, while agreeing with Balibar’s substantive positive position, I take issue with the way he situates it. Specifically, he casts it as a via negativa in relation to all previously existing thought. I suggest that it would be more accurate to say he is positioning the notion of the transindividual as a via media between two alleged extremes, individualism and organicism. I argue that the idea that there is an opposite and equal error to individualism is mistaken, and (...) that in actuality Balibar’s concept of the transindividual is not a radical departure from a long history of anti-individualism. (shrink)

By definitively establishing that racism has broad implications for how the entire field of philosophy is practiced -- and by whom -- this powerful and ...

Susan Babbitt dissects a common moral perspective for judging importance which she calls 'moral imagination.' In order to explain ourselves, and to recognize in others, what we often already perceive intuitively to be right or good, we instinctively create a story as a framework. She argues that we intentionally create stories which appear artless or chaotic, something capable of imperfection. This allows the story-maker to eventually deviate if he or she chooses, without a loss of hope, even if that (...) direction and goal may not yet be able to be fully articulated or defended. (shrink)

The Physician Orders for Life-Sustaining Treatment Paradigm is designed to improve end-of-life care by converting patients' treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. An observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care organizations/agencies (...) in combination with a review of relevant state law. (shrink)

The Physician Orders for Life-Sustaining Treatment Paradigm is designed to improve end-of-life care by converting patients’ treatment preferences into medical orders that are transferable throughout the health care system. It was initially developed in Oregon, but is now implemented in multiple states with many others considering its use. Accordingly, an observational study was conducted in order to identify potential legal barriers to the implementation of a POLST Paradigm. Information was obtained from experts at state emergency medical services and long-term care (...) organizations/agencies in combination with a review of relevant state law. Legal analysis of survey responses and existing laws identified several potential state legal barriers to a POLST Paradigm implementation. The most potentially problematic barriers are detailed statutory specifications for out-of-hospital DNR protocols. Other potential barriers include limitations on the authority to consent to forgo life-sustaining treatments, medical preconditions, and witnessing requirements for out-of-hospital DNR protocols. (shrink)