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 (1985) 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)

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)

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)

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)

The church must respond to the crisis of domestic violence with a renewed vision of forgiveness. As suggested in a parable of Jesus, forgiveness is viable when it is exercised within a community of mutual confession and accountability.

Usually viewed as the premier apologist for laissez-faire capitalism, Smith is seen in this new interpretation within the context of an earlier tradition that condemned the British aristocracy for relinquishing its moral obligation to promote the public good in favor of an unceasing pursuit of private gain. Through separate chapters on Mandeville, Bolingbroke, and Hume, Gallagher shows that Smith echoed civic humanist sermons against the avaricious inclinations of the nobles who profited most from commercial expansion. Unlike earlier critics, however, Smith (...) concluded that the most prudent response to aristocratic corruption was not to hold ministers, kings, and social notables to higher standards but to limit their access to political power. _The Rule of the Rich?_ accordingly shows that the case for limited government made in _The Wealth of Nations_ was not a defense of individual liberty so much as a concession to the apparent incompetence of the British upper class. (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)

METCO, America’s longest-running voluntary school desegregation program, has for 34 years bused black children from Boston’s city neighborhoods to predominantly white suburban schools. In contrast to the infamous violence and rage of forced school busing within the city in the 1970s, METCO has quietly and calmly promoted school integration. How has this program affected the lives of its graduates? Would they choose to participate if they had it to do over again? Would they place their own children on the bus (...) to suburbia? Sixty-five METCO graduates vividly recall their own stories in this revealing book. Susan E. Eaton interviewed program participants who are now adults, asking them to assess the benefits and hardships of crossing racial and class lines on their way to school. Their answers poignantly show that this type of racial integration is not easy—they struggled to negotiate both black and white worlds, often feeling fully accepted in neither. Even so, nearly all the participants believe the long-term gains outweighed the costs and would choose a similar program for their own children—though not without conditions and apprehensions. Even as courts and policymakers today are forcing the abandonment of desegregation, educators warn that students are better prepared in schools that reflect our national diversity. This book offers an accessible and moving account of a rare program that, despite serious challenges, provides a practical remedy for the persistent inequalities in American education. (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)

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.

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)

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)

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)

Previous governments and other commentators have emphasized the relationship between a teacher's knowledge of the subject material being taught and the quality of learning outcomes. This has been reflected in the entry requirements to Initial Teacher Training of public examination performance in the core subjects. However, disquiet has been expressed as to the efficacy of such qualifications as indicators of knowledge and skills at the entry point. Recent changes to ITT regulations require students' actual knowledge of the content of the (...) three core subjects to be audited. This paper reports and reflects on the effects that re-examining their knowledge and skills in mathematics has had on the confidence of primary trainee teachers. It presents some key questions that must be addressed if the current audit regulations are indeed to benefit our future teachers and to enhance the learning of our pupils. (shrink)

This paper describes the attributes of good mathematics teachers in the UK. These are derived from the material provided by 80 schools to applicants for mathematics teaching posts in the UK. The assumption is made that schools are trying to recruit the very best teacher and hence will have listed those attributes that they believe good teachers to have. Many of the attributes sought are not specifically about the teaching of mathematics. Indeed much about competency in the teaching of mathematics (...) is assumed and not made explicit. The requirements of schools are compared and contrasted with the Standards detailed in current Initial Teacher Training requirements and the Career Entry Profile used by newly qualified teachers. (shrink)

Fairness in evaluation processes for women in science and engineering is only one of a set of issues that need to be addressed to reach gender equality. This article uses concepts from Amartya Sen’s work on inequality to frame gender issues in science and technology policy. Programs that focus on increasing the number of women in science and engineering careers have not generally addressed a broader set of circumstances that intersect with gender at various economic levels and stages of life. (...) The agendas in research and innovation policies also need to reflect these issues, and fair allocation of resources within both science and technology needs to be on the agenda. Getting women into high-level positions is not enough. Articulating the full research and innovation agendas for women will require broader participatory processes. (shrink)

A live issue in anthropology and development studies, humanism is not typically addressed by analytic philosophers. Arguing for humanism as a view about truths, Humanism and Embodiment insists that disembodied reason, not religion, should be the target of secularists promoting freedom of enquiry and human community. Susan Babbitt's original study presents humanism as a meta-ethical view, paralleling naturalistic realism in recent analytic epistemology and philosophy of science. Considering the nature of knowledge, particularly the radical contingency of knowledge claims upon (...) causal mechanisms, religious thinkers like Thomas Merton and Ivan Illich offer more scientific conceptions of practical deliberation than are offered by some non-religious ethicists. Drawing on philosophical sources such as Marxism, Buddhism and Christianity, this original study considers implications of an embodied conception of reason, revealing philosophical, practical and political implications. (shrink)

This work has been selected by scholars as being culturally important, and is part of the knowledge base of civilization as we know it. This work was reproduced from the original artifact, and remains as true to the original work as possible. Therefore, you will see the original copyright references, library stamps (as most of these works have been housed in our most important libraries around the world), and other notations in the work.This work is in the public domain in (...) the United States of America, and possibly other nations. Within the United States, you may freely copy and distribute this work, as no entity (individual or corporate) has a copyright on the body of the work.As a reproduction of a historical artifact, this work may contain missing or blurred pages, poor pictures, errant marks, etc. Scholars believe, and we concur, that this work is important enough to be preserved, reproduced, and made generally available to the public. We appreciate your support of the preservation process, and thank you for being an important part of keeping this knowledge alive and relevant. (shrink)

Catharine MacKinnon's investigation of the role of sexuality in the subordination of women is a logical culmination of radical feminist thought. If this is correct, the position of her work relative to radical feminism is analogous to the place Parmenides's work occupied in ancient Greek philosophy. Critics of MacKinnon's work have missed their target completely and must engage her work in a different way if feminist theory is to progress past its current stalemated malaise.

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)

Past studies have shown that women’s volunteer work benefits communities but that women themselves tend to minimize their efforts. Most of these studies, however, have been limited to women volunteering in suburban and urban contexts. Drawing on a study of women volunteers in rural Iowa, the authors find that women frame their volunteer experiences in three ways: as an expression of their maternal nature, as a way to socialize, and as a contribution to the local economy. The authors’ findings depart (...) from past research in that the women in their sample do not downplay the importance of their volunteer work; rather, they recognize the importance of their unpaid labor for the social and economic vitality of the community. The authors argue this recognition stems from the particular context in which their volunteerism takes place, namely, in a devastated rural economy in which future economic potential rests on women’s hospitality work. (shrink)

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)