This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

Perceived behavioral integrity involves the employee’s perception of the alignment of the manager’s words and deeds. This meta-analysis examined the relationship between perceived behavioral integrity of managers and the employee attitudes of job satisfaction, organizational commitment, satisfaction with the leader and affect toward the organization. Results indicate a strong positive relationship overall (average r = 0.48, p<0.01). With only 12 studies included, exploration of moderators was limited, but preliminary analysis suggested that the gender of the employees and the number of (...) levels between the employee and the manager are potential moderators of the relationship. In the current sample of studies, country where the research was conducted did not seem to have any moderating effects. In addition to suggesting further investigation of potential moderators, we call for research that examines the relationship between behavioral integrity and outcomes that include individual behavior and organizational performance. (shrink)

Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...) sequencing or analysis of specific genomic conditions or whether PGS should be implemented using an all-or-nothing panel approach. We conclude that any responsible scale-up of PGS will require a menu approach that may seem impractical to some, but that draws its justification from a rich mix of normative, legal, and practical considerations. (shrink)

Our aim in this article is to define the difficulties that clinical ethics services encounter when they are asked to demonstrate the value a clinical ethics service (CES) could and should have for an institution and those it serves. The topic emerged out of numerous related presentations at the Un- Conference hosted by the Cleveland Clinic in August 2018 that identified challenges of articulating the value of clinical ethics work for hospital administrators. After a review these talks, it was apparent (...) that the field of clinical ethics may be at a crisis of sorts due to increased pressure to provide explicit measures to healthcare institutions to concretely demonstrate that CESs make a valuable difference in healthcare delivery. In this article, we grapple with how to satisfy the need for demonstrable value in a field in which metrics alone may not capture the scope of clinical ethics practice. We suggest that capturing the value of a CES has been difficult because the benefits of ethics consultation may be overt or attributable to the CES, but are often hidden due to the systems-level and process-oriented nature of clinical ethics work. Part of the difficulty in demonstrating the value of CESs is capturing and conveying all of the ways the integration of a CES throughout an institution positively affects patients, families, visitors, healthcare professionals, administrators, and the institution itself. Our aim is to (1) elucidate the multifaceted value added by a CES, including value that tends to be hidden and (2) suggest how to demonstrate value to others in a way that is not simplistic or reductionistic. (shrink)

This paper discusses the current fashion for brain-based learning, in which value-laden claims about learning are grounded in neurophysiology. It argues that brain science cannot have the ‘authority’ about learning that some seek to give it. It goes on to discuss whether the claim that brain science is relevant to learning involves a category mistake. The heart of the paper tries to show how the contribution of brain science to our grasp of the nature of learning is limited in principle. (...) Finally the paper explores the potential of brain science to illuminate specific learning disabilities. (shrink)

BackgroundThe U.S. Food and Drug Administration traditionally has kept confidential significant amounts of information relevant to the approval or non-approval of specific drugs, devices, and biologics and about the regulatory status of such medical products in FDA’s pipeline.ObjectiveTo develop practical recommendations for FDA to improve its transparency to the public that FDA could implement by rulemaking or other regulatory processes without further congressional authorization. These recommendations would build on the work of FDA’s Transparency Task Force in 2010.MethodsIn 2016-2017, we convened (...) a team of academic faculty from Harvard Medical School, Brigham and Women’s Hospital, Yale Medical School, Yale Law School, and Johns Hopkins Bloomberg School of Public Health to develop recommendations through an iterative process of reviewing FDA’s practices, considering the legal and policy constraints on FDA in expanding transparency, and obtaining insights from independent observers of FDA.ResultsThe team developed 18 specific recommendations for improving FDA’s transparency to the public. FDA could adopt all these recommendations without further congressional action.FundingThe development of the Blueprint for Transparency at the U.S. Food and Drug Administration was funded by the Laura and John Arnold Foundation. (shrink)

The paper argues that no criterion-referenced assessment system can achieve both reliability and validity at one and the same time. It shows that the reasons for this are conceptual, and hence that empirical research into the‘problem’ is a waste of money and effort. Considerable discussion is devoted to ideas of knowledge and understanding, and to proper educational objectives pertaining to these. Much reference is made to the current National Curriculum context in the United Kingdom, and conclusions are drawn for appropriate (...) educational policy in this area. (shrink)

The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...) be directly involved in research, instead banking the biospecimens and associated data for other researchers. Moreover, the future uses of biospecimens may be unknown, if not unknowable, at the time of collection. Biobanking may thus stretch the meanings of inform and consent to their breaking point: if you cannot inform subjects about what their biospecimens will be used for, what can they consent to? Given that informed consent by individual subjects is the ethical gold standard, the seeming dilution of the concept in the context of biobanking is a profound problem. (shrink)

Teachers are no longer simply being told what to teach, but also how to teach it. It is important therefore to examine whether some prescriptions of teaching methods are acceptable while others are not, and to justify opposition to certain forms of prescription. I show that some attempts to prescribe teaching methods are either empty, or incompatible with holding teachers to account for the pupil learning which is supposed to result. My argument does not depend on making any value assumptions (...) about ultimate educational aims. Examples from the National Literacy and Numeracy Strategies are discussed. (shrink)

In England, current government policy on children's reading is strongly prescriptive, insisting on the delivery of a pure and exclusive form of synthetic phonics, where letter sounds are learned and blended in order to ‘read’ text. A universally imposed phonics ‘check’ is taken by all five year olds and the results are widely reported. These policies are underpinned by the claim that research has shown systematic synthetic phonics to be the most effective way of teaching children to read. Andrew Davis (...) argues that there is a basic problem with this claim. Whatever it is that empirical researchers take themselves to be doing when they investigate synthetic phonics, they are not investigating a specifiable method of teaching reading. This is for two reasons. First, there are no such things as specifiable methods of teaching. Teaching is a vastly complex human activity involving contextual and reactive practical judgments that are responsive to the myriad contingencies of classroom life. The idea that teachers might proceed by way of prescribed methods rather than practical judgments is simply a fantasy. Second, teaching children to correlate letter combinations with sounds, and to blend sounds into sequences, is not teaching them to read. Reading is a matter of grasping meaning conveyed by text. While sustained attention to letter-sound correspondences can be helpful to some novice readers, we should neither assume that it is helpful to all nor confuse mastery of such correspondences with the ability to read. Davis's challenge to government policy on the teaching of reading, and to the empirical research that supposedly underpins it, is timely, radical and compelling. The zeal with which synthetic phonics is championed by its advocates has been remarkably effective in pushing it to the top of the educational agenda; but we should not mistake zeal for warrant. (shrink)

This pilot study had two purposes: (1) to review recent Japanese nursing literature on nursing advocacy; and (2) to obtain data from nurses on advocacy. For the second purpose, 24 nurses at a nursing college in Japan responded to a questionnaire. The concept of advocacy, taken from the West, has become an ethical ideal for Japanese nurses but one that they do not always understand, or, if they do, they find it difficult to fulfil. They cite nursing leadership support as (...) necessary to enacting this role. Discussion on the meaning of and the rationale for advocacy in a society where goodness or badness is relative to social situations and its impact may reveal two parallel but overlapping views of morality. Such a situation would not only influence notions of advocacy but also possibly render them more complex. (shrink)

Structured interviews were held with 149 registered nurses in seven countries in America, Asia, Australia and Europe concerning the feeding of severely demented patients who do not accept food. The most common reasons for nurses being willing to change their decision to feed or not to feed were an order from the medical head, a request from the patient's husband and/or the staff meeting. There was a connection between the willingness to feed and the ranking of ethical principles. Nurses who (...) were most prone to feed the patient most often gave a high rank to the ethical principle of sanctity of life, while those who primarily chose not to feed the patient gave a high rank to the ethical principle of autonomy. All nurses stressed the ethical principle of beneficence. Des interviews structurés ont eu lieu avec 149 infirmiers/ères dans sept pays en Amérique, Asie, Australie et Europe concernant l'alimentation des malades gravement dément qui refusent de manger. La raison la plus générale pour des infirmiers/ères d'être prêt à changer leures décisions de donner à manger ou non sont: un ordre du médecin, la demande du mari de la malade ou de la réunion du personnel. Il y avait un lien entre la volonté de nourir et le rang des principes éthiques. Les infirmiers/ères les plus enclins de nourir la malade le plus souvent donnaient un rang supérieur au principe éthique de la sainteté de vie, pendant que ceux et celles qui choisissaient de ne pas nourrir la malade donnaient un rang supérieur au principe éthique de l'autonomie. Tous insistaient sur l'importance du principe éthique de la bienfaisance. Konstruktive Interviews wurden mit 149 ausgebildeten Krankenschwestern und Pfleger in sieben Ländern in Amerika, Asien, Australien und Europa gehalten über die Ernährung von schwer von Dementia praecox leidenden Patienten, die das Essen verweigern. Die gewöhnlichsten Gründe des Pflegepersonals für die Bereitwilligkeit, ihre Entscheidung, zu ernähren oder nicht, zu ändern, waren Anordnungen vom medizinischen Chef, Anfragen vom Ehemann der Patientin und/oder einer Personalsitzung. Es bestand ein Zusammenhang zwischen der Bereitwilligkeit zur Ernährung und dem Rang der ethischen Prinzipien. Die Pflegenden, die sich am meisten neigten, die Patientin zu ernähren, gaben dem ethischen Prinzip der Heiligkeit des Lebens einen hohen Rang, während die, die meistens vorzogen, die Patientin nicht zu ernähren, gaben dem ethischen Prinzip der Autonomie einen hohen Rang. Alle Pflegenden legten grossen Wert auf das ethische Prinzip der Wohltätigkeit. (shrink)

This article introduces the special issue on ‘Elites and Power after Financialization’. It is presented in three parts. The first sets out the original Weberian problematic that directed the work of Michels and Mills, in the 1910s and 1950s respectively. It then discusses how this framework was appropriated and then cast aside as our understanding of capitalism changed. The second section makes the case for a reset of elite studies around the current capitalist conjuncture of financialization. It is explained how (...) this unifying theme allows for a diverse set of approaches for answering old and new questions about elites and power. The third part identifies four key themes or sites of investigation that emerge within the nine papers offered here. These are: new state-capital relations, innovative forms of value extraction, new elite insecurities and resources in liquid times and the role of elite intermediaries and experts. (shrink)

Genomic biobanks present ethical challenges that are qualitatively unique and quantitatively unprecedented. Many critics have questioned whether the current system of informed consent can be meaningfully applied to genomic biobanking. Proposals for reform have come from many directions, but have tended to involve incremental change in current informed consent practice. This paper reports on our efforts to seek new ideas and approaches from those whom informed consent is designed to protect: research subjects. Our model emerged from semi-structured interviews with healthy (...) volunteers who had been recruited to join either of two biobanks , and whom we encouraged to explain their concerns and how they understood the relationship between specimen contributors and biobanks. These subjects spoke about their DNA and the information it contains in ways that were strikingly evocative of the legal concept of the trade secret. They then described the terms and conditions under which they might let others study their DNA, and there was a compelling analogy to the commonplace practice of trade secret licensing. We propose a novel biobanking model based on this trade secret concept, and argue that it would be a practical, legal, and ethical improvement on the status quo. (shrink)

A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for (...) the competent adult patient. The family Is uniformly viewed as an Important proxy decision maker for incompetent patients; but most bioethicists would eschew any decision-making role for the family of mentally competent adult patients. Underlying the discussion of autonomy is the basic assumption in western medicine that good healthcare Involves choices by Informed individuals. (shrink)

While risk of harm is an important focus for whether clinical research on humans can and should proceed, there is uncertainty about what constitutes harm to a trial participant. In Phase I trials on healthy volunteers, the purpose of the research is to document and measure safety concerns associated with investigational drugs, and participants are financially compensated for their enrollment in these studies. In this article, we investigate how characterizations of harm are narrated by healthy volunteers in the context of (...) the adverse events they experience during clinical trials. Drawing upon qualitative research, we find that participants largely minimize, deny, or re-attribute the cause of these AEs. We illustrate how participants' interpretations of AEs may be shaped both by the clinical trial environment and their economic motivation to participate. While these narratives are emblematic of the larger ambiguity surrounding harm in the context of clinical trial participation, we argue that these interpretations also problematically maintain the narrative of the safety of clinical trials, the ethics of testing investigational drugs on healthy people, and the rigor of data collected in the specter of such ambiguity. (shrink)

Over the last two decades the traditional conception of intelligence and other mental powers as stable individual assets has been challenged by approaches in psychology emphasising context and ‘situated cognition’. This paper argues that the debate should not be seen as an empirical dispute, and relates it to discussions in philosophy of mind between methodological solipsists and varieties of externalists. In the light of this I argue that attempts to conceptualise the identity over time of mental powers qua individual assets (...) run into intractable difficulties. Hence ‘individual asset’ views of many abilities should be abandoned. Implications for education policy particularly in regard to assessment are explored. (shrink)

Andrew Davis; Ability and Learning, Journal of Philosophy of Education, Volume 22, Issue 1, 30 May 2006, Pages 45–55, https://doi.org/10.1111/j.1467-9752.1988.t.

Background: Advocacy is an important role of psychiatric nurses because their patients are ethically, socially, and legally vulnerable. This study of Japanese expert psychiatric nurses’ judgments of interventions for patient advocacy will show effective strategies for ethical nursing practice and their relationship with Japanese culture. Objectives: This article explores Japanese psychiatric nurses’ decision to intervene as a patient advocate and examine their ethical, cultural, and social implications. Research design: Using semi-structured interviews verbatim, themes of the problems that required interventions were (...) inductively summarized by a qualitative analysis and their contexts and nursing judgments were examined. Participants and research context: The participants were 21 nurses with 5 or more years of experience in psychiatric nursing. Ethical considerations: The research was approved by Institutional Review Board of research site and study facilities. The participants gave written informed consent. Findings: Analysis of 45 cases showed that nurses decided to intervene when surrounding people’s opinions impeded patients’ safety, healthcare professionals’ policies impeded patients’ decision-making, own violent behaviors impeded treatment and welfare services for patients, own or families’ low acceptance of illness impeded patients’ self-actualization, inappropriate treatment or care impeded patients’ liberty, and their families abused patients’ property. Discussion: To solve conflicts between patients and their surrounding people, the nurses sought reconciliation between them, which is in accordance with Japanese cultural norms respecting harmony. When necessary, however, they protected patients’ rights against cultural norms. Therefore, their judgments cannot be explained by cultural norms alone. Conclusion: The findings indicate that the nurses’ judgments were based on respect for patients’ rights apart from cultural norms, and they first sought solutions fitting the cultural norms before other solutions. This seems to be an ethical, effective strategy if advocates know the culture in depth. (shrink)

I use Ian Hacking 's views to explore ways of classifying people, exploiting his distinction between indifferent kinds and interactive kinds, and his accounts of how we 'make up' people. The natural kind/essentialist approach to indifferent kinds is explored in some depth. I relate this to debates in psychiatry about the existence of mental illness, and to educational controversies about the credentials of learner classifications such as 'dyslexic'. Claims about the 'existence' of learning disabilities cannot be given a clear, simple (...) and unambiguous interpretation. In particular I show that science cannot deliver a definitive taxonomy of learner categories, and that this has important implications for teachers and policy makers. (shrink)

Teachers are no longer simply being told what to teach, but also how to teach it. It is important therefore to examine whether some prescriptions of teaching methods are acceptable while others are not, and to justify opposition to certain forms of prescription. I show that some attempts to prescribe teaching methods are either empty, or incompatible with holding teachers to account for the pupil learning which is supposed to result. My argument does not depend on making any value assumptions (...) about ultimate educational aims. Examples from the National Literacy and Numeracy Strategies are discussed. (shrink)

Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...) National Institutes of Health aims to collect large numbers of diverse human tissues with the eventual goal of elucidating the genetic bases of common diseases through a better understanding of the relationship between genetic variation and gene expression. (shrink)

Neoliberalism and financialization are not synonymous developments. Financialized nations are directed by particularly financialized epistemologies, cultures, and practices, not only neoliberal ones. In examining the financialization of the UK economy since the mid-1970s, this study discovers a socio-economic shift beyond the broad transition from Keynesianism towards free-market fundamentalism. Economic developments were guided by the very particular economic paradigms, discursive practices, and financial devices of the City of London, as financial elites became influential in the Thatcher governments. Five epistemological elements specific (...) to finance are discussed: the creation of money in financial markets, the transactional focus of finance, the centrality of financial markets to economic management, the orthodoxy of shareholder value, and the intensely micro-economic approach to financial calculation. Identifying these distinctions creates new possibilities for understanding financialization, elites, and the neoliberal condition that brought about both the financial crash of 2007–8 and the political and economic crises that have followed. (shrink)

The large body of literature labeled “ethics in nursing education” is entirely devoted to curricular matters of ethics education in nursing schools, that is, to what ought to be the ethics content that is taught and what theory or issues ought to be included in all nursing curricula. Where the nursing literature actually focuses on particular ethical issues, it addresses only single topics. Absent from the literature, however, is any systematic analysis and explication of ethical issues or dilemmas that occur (...) within the context of nursing education. The objective of this article is to identify the spectrum of ethical issues in nursing education to the end of prompting a systematic and thorough study of such issues, and to lay the groundwork for research by identifying and provisionally typologizing the ethical issues that occur within the context of academic nursing. (shrink)

How far can consistent assessment capture all the worthwhile features of educational achievement? Are some important components of learning necessarily open to a range of potentially inconsistent judgments by different assessors? I argue for a cautiously affirmative answer to this question, drawing on analogies with aesthetic judgments and a rehearsal of the holistic characteristics of some assessment criteria. I also employ recent treatments of moral particularism and of concepts of incommensurability to oppose the drive for consistency in assessment required by (...) a high stakes accountability regime. (shrink)

Through a collection of contributions from an international team of empirical researchers and philosophers, _New Philosophies of Learning_ signals the need for a sharper critical awareness of the possibilities and problems that the recent spate of innovative learning techniques presents. Explores some of the many contemporary innovations in approaches to learning, including neuroscience and the focus on learners’ well-being and happiness Debates the controversial approaches to categorising learners such as dyslexia Raises doubts about the preoccupation with quasi-mathematical scrutiny and the (...) neglect of ethical reflection about education Discusses the possible grounds for concern, without exaggerating their similarities or offering sweeping judgements Includes contributions from empirical researchers and philosophers, including Usha Goswami, Howard Gardner, Julian Elliott, David Bakhurst, John White and Christopher Winch. (shrink)

Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part (...) of the ELSI study design, the project included an ongoing reflexive ethnography in which the authors studied the process of its design and implementation. The authors were true participant observers, serving as members of various task-oriented groups while recording meetings and other events for ongoing qualitative analysis. We also conducted and analyzed interviews of multiple participants at the conclusion of the project.Results: Our real-time ELSI initiative had a mixed record of successes and challenges. If we define success as ELSI researchers having had an opportunity to participate fully in the project and to make the ELSI perspective heard, then our assessment is largely positive. If, however, we define successes as instances where real-time ELSI contributions changed the direction of the genomic or public health aspects of the GeneScreen project or, after careful deliberation, confirmed the appropriateness of the status quo, then we can identify only a few examples. While we had a seat at the table, we were, for the most part, tolerated guests.Conclusions: We conclude that there are significant barriers to real-time ELSI influence. The difficulty does not reside in any intended exclusion of an ELSI perspective, but in factors endemic to genomic research, including knowledge disparities, epistemological biases, and the pressures of time and money. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

This paper argues for a largely unnoted distinction between relational and modal components in the lexical semantics of verbs. Wehypothesize that many verbs encode two kinds of semantic information:a relationship among participants in a situation and a subset ofcircumstances or time indices at which this relationship isevaluated. The latter we term sublexical modality.We show that linking regularities between semantic arguments andsyntactic functions provide corroborating evidence in favor of thissemantic distinction, noting cases in which the semantic groundingof linking through participant-role properties (...) apparently fails. Thissemantic grounding can be preserved, however, once we abstractaway from sublexical modality in lexical semantic representations.Semantically-based linking constraints are insensitive to the sublexicalmodality component of lexical entries and depend only on informationin a predicator's situational core. (shrink)

PISA claims that it can extend its reach from its current core subjects of Reading, Science, Maths and problem-solving. Yet given the requirement for high levels of reliability for PISA, especially in the light of its current high stakes character, proposed widening of its subject coverage cannot embrace some important aspects of the social and aesthetic world. Verdicts on the latter often have holistic features, and there are dangers that such verdicts involve attempts to compare what cannot be compared. Judgments (...) about the normative and the social often feature a legitimate lack of consistency. (shrink)

Social externalism implies that many competences are not personal assets separable from social and cultural environments but complex states of affairs involving individuals and persisting features of social reality. The paper explores the consequences for competence identity over time and across contexts, and hence for the predictive role usually accorded to competences.

Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and proxies as “bad,” when they are not, can take an unnecessary toll on (...) trainees’ emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

This article, reporting on selected data from a larger study, discusses some responses to end-of-life questions that elderly Japanese people who were living in small towns gave in a questionnaire survey. Japan is now the country with the largest number of elderly people in the world and confronts numerous social and economic questions concerning how best to cope with its older population. Although it is a highly urbanized society, Japan also has large semirural areas. The focus here is on the (...) questions in the survey that sought responses to ethical dimensions of end-of-life issues. The findings demonstrate the strength of traditional values that still exist throughout small towns in Japan. (shrink)

Background: Despite procedural innovations and increasing numbers of uterus transplant attempts worldwide, the perspectives of uterus transplant (UTx) trial participants are lacking. Methods: We conducted a mixed-methods study with women with absolute uterine factor infertility (AUFI). Participants included women who had previously contacted the Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. In-depth interviews were conducted in conjunction with FertiQoL, a validated and widely used tool to measure the impact of infertility on the (...) quality of life of infertility patients. Results: All (n = 19) rated their overall health as good; some experienced grief and social isolation. AUFI is a life-framing experience that influences acceptance by family, partners, peers, and one’s self. UTx is a means to gain control of reproductive autonomy. UTx allows family-building and the ability to play an active role in prenatal health and well-being. Establishing and maintaining a supportive relationship is a key issue of AUFI and when considering UTx. Risks of UTx are perceived relative to risks to self/child/family posed by adoption/surrogacy. Participants had no overall preference regarding living or deceased donor. Conclusions: The ways in which women with AUFI conceptualize this condition in their lives and choices around UTx and participating in a study of the procedure are multifaceted and textured. These perspectives are critical to understanding its ethical, legal, and social implications. (shrink)

Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...) the moral significance of paying careful heed to where one looks for guidance in responding to ethical questions raised by a novel endeavor. (shrink)

In this response, I agree with much of what Schrag says about the principled limits of neuroscience to inform educators' decisions about approaches to learning. However, I also raise questions about the extent to which discoveries about ‘deficits’ in brain function could possibly help teachers. I dispute Schrag's view that externalism/internalism debates in the philosophy of mind are relatively arcane and lack implications for the importance or otherwise for education of discoveries about the brain.