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)

Approximately 62,000 people in this country await organ transplants. Ten years ago the waiting list numbered 16,000. The line gets longer every day. Up to 30% of those waiting in line will die waiting. We face a chronic shortage of organs. While demand for organs steadily increases, the number of cadaveric organ donors remains relatively constant: approximately 4,000 in 1988, and approximately 5,500 in 1997. In response to this environment of scarcity, policymakers have considered initiatives in a number of domains.

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)

BackgroundGenealogical research and ancestry testing are popular recreational activities but little is known about the impact of the use of these services on clients’ biological and social families. Ancestry databases are being enriched with self-reported data and data from deoxyribonucleic acid analyses, but also are being linked to other direct-to-consumer genetic testing and research databases. As both family history data and DNA can provide information on more than just the individual, we asked whether companies, as a part of the consent (...) process, were informing clients, and through them clients’ relatives, of the potential implications of the use and linkage of their personal data.MethodsWe used content analysis to analyse publically-available consent and informational materials provided to potential clients of ancestry and direct-to-consumer genetic testing companies to determine what consent is required, what risks associated with participation were highlighted, and whether the consent or notification of third parties was suggested or required.ResultsWe identified four categories of companies providing: 1) services based only on self-reported data, such as personal or family history; 2) services based only on DNA provided by the client; 3) services using both; and 4) services using both that also have a research component. The amount of information provided on the potential issues varied significantly across the categories of companies. ‘Traditional’ ancestry companies showed the greatest awareness of the implications for family members, while companies only asking for DNA focused solely on the client. While in some cases companies included text recommending clients inform their relatives, showing they recognised the issues, often it was located within lengthy terms and conditions or privacy statements that may not be read by potential clients.ConclusionsWe recommend that companies should make it clearer that clients should inform third parties about their plans to participate, that third parties’ data will be provided to companies, and that that data will be linked to other databases, thus raising privacy and issues on use of data. We also suggest investigating whether a ‘generational consent’ should be created that would include more than just the individual in decisions about participating in genetic investigations. (shrink)

Since November 2, 2002, every state's abortion law has stood at risk of complete revision. With one easily overlooked sentence, federal regulators declared in October 2002 that effective the following month, states could make available healthcare coverage directly to organisms at the moment of conception.

When surgeons transplant animal organs into humans, people who did not receive the organs incur risks. These third parties may stand near or far in time or space. No one knows the likelihood, breadth, or nature of the risks in question. The common wisdom among infectious-disease specialists is that in the best of xenotransplant conditions, such third-party risk may be minimized but not eliminated.

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)

In this article, I review recent findings in cognitive neuroscience in learning, particularly in the learning of mathematics and of reading. I argue that while cognitive neuroscience is in its infancy as a field, theories of learning will need to incorporate and account for this growing body of empirical data.

In this essay, I suggest that significant insights of recent feminist philosophy lead, among other things, to the thought that it is not always better to choose than to be compelled to do what one might have done otherwise. However, few feminists, if any, would defend such a suggestion. I ask why it is difficult to consider certain ideas that, while challenging in theory, are, nonetheless, rather unproblematic in practice. I suggest that some questions are not pursued seriously enough by (...) philosophers, because certain popular liberal conceptions of individuality and freedom are taken too much for granted. (shrink)

Fifty years ago, Henry Knowles Beecher published his essay on clinical research ethics in the New England Journal of Medicine. The culmination of more than a decade and a half’s rumination and reflection on the use of patients and “captive populations” in research, Beecher’s 1966 article understandably casts a large shadow in American bioethics. In 1976, the Institute of Society, Ethics and the Life Sciences established the Henry Knowles Beecher Award for Contributions to Ethics and the Life Sciences and named (...) the Harvard professor as the first recipient of the Award. “It is unusual for a researcher,” Daniel Callahan explained, on behalf of the Board of Directors of the... (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)

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)

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)

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)

ExcerptIn 2021, in the pages of this journal, I contended that a coalition of interests in the United States had coalesced in opposition to the presidency of Donald Trump and duly taken power through the vehicle of Joe Biden.1 This coalition includes the Democratic Party, corporate elites, the media, academia, and—the subject of the present article—the national security (natsec) state. In that earlier piece, I focused on particular components of this coalition: legacy and social media. I went on in a (...) subsequent Telos piece to examine another of its elements: the academy.2 These fractions all appear, however, to be relatively minor players. While I argue that the legacy media have staged a counterrevolution to seize back control of the public sphere, this exhausts their parochial, pecuniary agenda; beyond this, they are simply part of a wider activist liberal cause. Contemporary liberal activism is in turn ideologically rooted in ideas propagated by sectors of the academy and hegemonic within it, but this has not, on my analysis, empowered the academy so much as the forces that make it increasingly redundant. (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)

IntroductionAs we near the semicentennial of the 1976 publication of the first volume of Foucault’s History of Sexuality, for all its influence in the interim, this work remains today extraordinarily challenging in relation to our sexual mores. In this article, I will attempt to reapply its insights to analyze contemporary trends in sexuality and gender. Questions that I will consider include the continuing applicability of Foucault’s analyses, to what extent and how they may need to be revised in light of (...) historical developments, and what reading Foucault can tell us about our contemporary conjuncture. I will argue that volume 1 of The History of Sexuality remains highly relevant in this regard, although I will also indicate some ways in which things have moved on since Foucault’s time, and thus in which his thesis might be modified. Despite Foucault having apparently been extremely influential on academic thinking about sex, we seem nonetheless to have become or remained “other Victorians,” perversely mimicking the nineteenth-century sexology that Foucault pilloried. I will argue that we have continued to believe exactly the great myths about sex that Foucault sought to dispense with: namely, that sexuality has primarily been shaped by historic “repression,” that sexuality needs to be “liberated” from this repression, and that there is a “truth of sex” that is on the side of freedom. These beliefs have all mutated, however, to the extent that questions of sex (like many other social questions) are increasingly oriented around individual identities and the supposed sovereignty of the individual to determine their own truth. (shrink)

On September 23, 1949, President Harry Truman announced that the Soviet Union had successfully detonated an atomic bomb. The news that the Soviet Union had done this came as little surprise to a number of American scientists and to some members of the intelligence community who had predicted that the Soviets would quickly acquire this advanced weapons technology. But for many Americans this news was disturbing. Truman’s announcement was taken up by, among others, a young Baptist evangelist named Billy Graham. (...) Opening a tent revival in Los Angeles just two days after the President’s report, Graham preached how the news of the Soviet bomb test had “startled the world” and launched an “arms race unprecedented in the history of the world.” President Truman, he informed his listeners, said that we “must be prepared for any eventuality at any hour….” Perhaps even more ominously he asked the crowd, “Do you know the area that is marked out for the enemy’s first atomic bomb? New York! Secondly, Chicago; and thirdly, the city of Los Angeles!” It was not only evangelical preachers who foresaw catastrophic implications from a growing arsenal of atomic weapons. (shrink)

This paper reviews 30 years of progress in U.S. cognitive science research related to education and training, as seen from the perspective of a research manager who was personally involved in many of these developments.

No one denies that people adapt what they say and how they interpret what is said to them, depending on their interactive partners. What is controversial is when and how they do so. Several psycholinguistics research programs have found what appear to be failures to adapt to partners in the early moments of processing and have used this evidence to argue for modularity in the language processing architecture, claiming that the system cannot take into account a partner’s distinct needs or (...) knowledge early in processing. We review the evidence for both early and delayed partner‐specific adaptations, and we identify some challenges and difficulties with interpreting this evidence. We then discuss new analyses from a previously published referential communication experiment (Metzing & Brennan, 2003) demonstrating that partner‐specific effects need not occur late in processing. In contrast to Pickering and Garrod (2004) and Keysar, Barr, and Horton (1998b), we conclude that there is no good evidence that early processing has to be be “egocentric,”“dumb,” or encapsulated from social knowledge or common ground, but that under some circumstances, such as when one partner has made an attribution about another’s knowledge or needs, processing can be nimble enough to adapt quite early to a perspective different from one’s own. (shrink)

In this paper we consider the potential role of metarepresentation—the representation of another representation, or as commonly considered within cognitive science, the mental representation of another individual's knowledge and beliefs—in mediating definite reference and common ground in conversation. Using dialogues from a referential communication study in which speakers conversed in succession with two different addressees, we highlight ways in which interlocutors work together to successfully refer to objects, and achieve shared conceptualizations. We briefly review accounts of how such shared conceptualizations (...) could be represented in memory, from simple associations between label and referent, to “triple co-presence” representations that track interlocutors in an episode of referring, to more elaborate metarepresentations that invoke theory of mind, mutual knowledge, or a model of a conversational partner. We consider how some forms of metarepresentation, once created and activated, could account for definite reference in conversation by appealing to ordinary processes in memory. We conclude that any representations that capture information about others' perspectives are likely to be relatively simple and subject to the same kinds of constraints on attention and memory that influence other kinds of cognitive representations. (shrink)

The current paper provides readers some clarifications on the nature and goals of mass media campaigns designed to promote organ donation. These clarifications were necessitated by an earlier essay by Rady et al. (Med Health Care Philos 15:229–241, 2012) who present erroneous claims that media promotion campaigns in this health context represent propaganda that seek to misrepresent the transplantation process. Information is also provided on the nature and relative power of media campaigns in organ donation promotion.