Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Many philosophers have been persuaded that if we don’t create our own characters, we cannot be responsible for acts that flow from our characters; they also raise doubts about whether acts that do not flow from our characters can fairly be attributed to us. Both these concerns, however, reflect a simplistic and implausible conception of character and of its relation to our actions and our selves. I suggest a different relationship between character and responsibility: We can be responsible for acts (...) that are in character and also for acts that are out of character, but to be capable of being responsible at all is closely related to the capacity to have a character. I relate this capacity to the exercise of active intelligence—a capacity that is manifested in actions in or out of character, but not in the display of many psychological conditions or disorders. (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)

Miranda Fricker?s research carefully negotiates the fields of ethics and epistemology, and the places and points where they overlap and intersect. Her 2007 text Epistemic injustice: Power and the ethics of knowing is particularly noteworthy in this regard. It seamlessly integrates these research areas and, in so doing, turns a critical eye on the common assumption that feminist epistemology, characterized by its focus on the role of gender oppression within knowledge practices, is a marginal field of social epistemology. Fricker challenges (...) her readers to consider the thesis that social and feminist epistemologies are more thoroughly interconnected than is traditionally assumed. (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 paper looks at a range of metaphors used within HIV/AIDS discussions and research in support of the claim that bioethicists should pay serious attention to metaphors. Metaphors shape the ways we think about problems and the types of solutions we investigate. HIV/AIDS is an especially rich field for the investigation of metaphor, since the struggles for dominance among different metaphorical options has been very evident. In the field of medical resarch as well as in the area of public policy, (...) different metaphors support different strategies and, therefore, the choice of metaphor has ethical significance. I argue that feminists should engage in these debates since they have an interest in the metaphors selected. They can also learn to be more self-conscious in choosing politically liberating metaphors in other bioethics contexts. (shrink)

Background: Hospitals are experiencing an estimated 16.5% turnover rate of registered nurses costing from $44,380 - $63,400 per nurse—an estimated $4.21 to $6.02 million financial loss annually for hospitals in the United States of America. Attrition of all nurses is costly. Most past research has focused on the new graduate nurse with little focus on the mid-career nurse. Attrition of mid-career nurses is a loss for the profession now and into the future. Research objective: The purpose of the study was (...) to explore relationships of professional values orientation, career development, job satisfaction, and intent to stay in recently hired mid-career and early-career nurses in a large hospital system. Research design: A descriptive correlational study of personal and professional factors on job satisfaction and retention was conducted. Participants and research context: A convenience sample of nurses from a mid-sized hospital in a metropolitan area in the Southwestern United States was recruited via in-house email. Sixty-seven nurses met the eligibility criteria and completed survey documents. Ethical considerations: Institutional Review Board approval was obtained from both the university and hospital system. Findings: Findings indicated a strong correlation between professional values and career development and that both job satisfaction and career development correlated positively with retention. Discussion: Newly hired mid-career nurses scored higher on job satisfaction and planned to remain in their jobs. This is important because their expertise and leadership are necessary to sustain the profession into the future. Conclusion: Nurse managers should be aware that when nurses perceive value conflicts, retention might be adversely affected. The practice environment stimulates nurses to consider whether to remain on the job or look for other opportunities. (shrink)

The Covid‐19 pandemic has exposed four myths in bioethics. First, the flood of bioethics publications on how to allocate scarce resources in crisis conditions has assumed authorities would declare the onset of crisis standards of care, yet few have done so. This leaves guidelines in limbo and patients unprotected. Second, the pandemic's realities have exploded traditional boundaries between clinical, research, and public health ethics, requiring bioethics to face the interdigitation of learning, doing, and allocating. Third, without empirical research, the success (...) or failure of ethics guidelines remains unknown, demonstrating that crafting ethics guidance is only the start. And fourth, the pandemic's glaring health inequities require new commitment to learn from communities facing extraordinary challenges. Without that new learning, bioethics methods cannot succeed. The pandemic is a wake‐up call, and bioethics must rise to the challenge. (shrink)

Successful preimplantation genetic diagnosis to avoid creating a child affected by a genetically-based disorder was reported in 1989. Since then PGD has been used to biopsy and analyze embryos created through in viuo fertilization to avoid transferring to the mother’s uterus an embryo affected by a mutation or chromosomal abnormality associated with serious illness. PGD to avoid serious and early-onset illness in the child-to-be is widely accepted. PGD prevents gestation of an affected embryo and reduces the chance that the parents (...) will be faced with a difficult decision of whether to terminate the pregnancy. More controversial have been PGD to select the sex of the child-to-be for “family balancing”, PGD for mere susceptibility to disease and for late-onset disorders such as Alzheimer diseas, and most controversially, PGD to create a donor child who is Human Leukocyte Antigen (HLA-matched with a preexisting sibling in need of stem cell transplant. (shrink)

The Mind Doesn’t Work That Way is an expose of certain theoretical problems in cognitive science, and in particular, problems that concern the Classical Computational Theory of Mind (CTM). The problems that Fodor worries plague CTM divide into two kinds, and both purport to show that the success of cognitive science will likely be limited to the modules. The first sort of problem concerns what Fodor has called “global properties”; features that a mental sentence has which depend on how the (...) sentence interacts with a larger plan (i.e., set of sentences), rather than the type identity of the sentence alone. The second problem concerns what many have called, “The Relevance Problem”: the problem of whether and how humans determine what is relevant in a computational manner. However, I argue that the problem that Fodor believes global properties pose for CTM is a non-problem, and that further, while the relevance problem is a serious research issue, it does not justify the grim view that cognitive science, and CTM in particular, will likely fail to explain cognition. (shrink)

In a well-known text called ‘The Communist Hypothesis’, first published in 2007, the renowned philosopher Alain Badiou breathed fresh life into the idea of communism as an intellectual representation that provides a critical perspective on existing politics and offers a systemic alternative to capitalism. Now, in the course of this wide-ranging conversation with Peter Engelmann, Alain Badiou explains why he continues to value the idea of communism against the background of current social crises and despite negative historical experiences. From the (...) anticipation of a communism without a state to the problem of the concept of democracy and an analysis of capitalism as a system, the two thinkers discuss the key political issues of our time. Whilst explaining his political philosophy, Badiou also reflects on current socio-political developments such as the turmoil in the Middle East and the situation in China. This compelling dialogue is both a highly topical contribution to the question of how we might organize our societies differently and an accessible introduction to Badiou's philosophical thinking. (shrink)

The popular press has claimed that Secretary of the Interior James Watt bases his philosophy of environmental management on his religious views as a charismatic Christian. An examination of Watt’s published statements indicates: his philosophy of environmental management sterns largely from economic and political considerations; he has a relatively simple ecotheology based on concepts such as God providing creation as a blessing for mankind, and mankind having a stewardship responsibility to use resources to provide for people; his ecotheology does not (...) incorporate any characteristically charismatic ideas; and his ecotheology does not strongly parallel that of conservative Christian theologians who have written on environmental issues. This analysis suggests that for the new “Christianpolitic” as a whole, there is a danger of confusing the scriptural with the cultural and political in the area of environmental ethics. If a Christian ecotheology is going to be used for environmental decision making, it should be developed fully and represent scripture accurately and completely. (shrink)

The question of how actin filaments are attached to membranes is of central importance to an understanding of how actin gives rise to shape and movement in cells. A number of approaches to this question have been taken, but there have been few definitive answers. Some of the limitations of these approaches are discussed, as well as possible avenues for overcoming them.

Il buono, il brutto e il cattivo. Disambiguare il naturalismo di Quine - Quine’s ‘epistemology naturalised’ has been profoundly influential, but it is also highly ambiguous. Quine seems at times to claim only that epistemology is not a purely a priori enterprise but an empirical study, continuous with the sciences of cognition; at others, that epistemological questions can be turned over to the sciences to resolve; and on other occasions, that epistemological questions are misconceived and should be replaced by scientific (...) investigation into cognition. What is argued here is that the first and most modest version of Quine’s epistemological naturalism is potentially fruitful, the second and more ambitious indefensible, and the third and most ambitious not only false but disastrous. (shrink)

Even with the passage of time, the misguided motivations of highly educated, physician-participants in the genocide known as the Holocaust remain inexplicable and opaque. Typically, the physician-patient relationship inherent within the practice of medicine, has been rooted in the partnership between individuals. However, under the Third Reich, this covenant between a physician and patient was displaced by a public health agenda that was grounded in the scientific theory of eugenics and which served the needs of a polarized political system that (...) relied on this hypothesis to justify society’s racial hygiene laws. As part of the National Socialist propaganda, Adolf Hitler ominously argued that the cultural decline of Germany after World War I could largely be based on interbreeding and a “resultant drop in the racial level.” This foundational premise defined those who could be ostracized, labeled and persecuted by society, including those who were assimilated. The indoctrination and implementation of this distorted social policy required the early and sustained cooperation and leadership of the medical profession. Because National Socialism promised it could restore Germany’s power, honor and dignity, physicians embraced their special role in the repair of the state. This article will explore the imperative role, moral risks and deliberate actions of physicians who participated in the amplification process from “euthanasia” to systemic murder to medically-sanctioned genocide. A goal of this analysis will be to explore what perils today’s physicians would face if they were to experience the transitional and collective behaviors of a corrupted medical profession, or if they would, instead, have the fortitude and courage necessary to protect themselves against this collaboration. Our premise is that an awareness of history can serve as a safeguard to the conceit of political ascendency and discrimination. (shrink)

Kristina Rolin (2002), in her article in Social Epistemology, asks the question, “Is ‘the social’ a feminist insight?” Rolin then goes on to examine this observation further in the context of femin...

This book shows the Emersonian arc in environmental ethics and nature writing extending into contemporary discussions of those topics. Dunston connects Emerson’s nature literacy and natural philosophy to contemporary forms of eco-feminism, living systems theory, Native American science, Asian philosophy, and environmental activism.

Depending on how one looks at it, we have been enjoying or suffering a significant empirical turn in moral psychology during this first decade of the 21st century. While philosophers have, from time to time, considered empirical matters with respect to morality, those who took an interest in actual (rather than ideal) moral agents were primarily concerned with whether particular moral theories were ‘too demanding’ for creatures like us (Flanagan, 1991; Williams, 1976; Wolf, 1982). Faithful adherence to Utilitarianism or Kantianism (...) would appear to be inconsistent with other things we value, like personal integrity and flourishing, which depend upon pursuing individually determined projects and ways of life in rather single-minded ways. Maximizing the good is a full-time job, and the impartiality recommended by Kantian theory can get in the way of showing special care for those we know and love. All this is standard philosophical fare. However, more recently, philosophers and psychologists have begun to treat moral psychology as a legitimate branch of cognitive science. They inquire into the evolution of morality (e.g., Joyce, 2007; Nichols 2004), debate the human uniqueness of moral capacities (e.g., deWaal, 2006; Hauser, 2006), investigate the causal etiology of moral judgments (e.g., Haidt & Greene, 2002; Hauser et al., 2006; Prinz, 2006), attempt to map the neuroanatomy of moral reasoning (e.g., Greene et al., 2001; Greene et al., 2004; Moll, et al., 2005), and consider what other affective and cognitive capacities are required by a creature who sees the world in moral terms. (See also Sinnott-Armstrong, 2007, 2008a, 2008b). 1 In this essay, I discuss two issues whose interdependence and central importance for empirically informed moral psychology have not been fully grasped, or so I believe. First is what I call the Explananda Challenge. Let us assume that the primary question for moral psychology is this: How is it possible for human beings to be moral creatures? Deceptively simple, this question obscures a number of rather more difficult ones.. (shrink)

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To say that man is made up of strength and weakness, pettiness and grandeur, is not to draw up an indictment against him: it is to define him.Denis Diderot Introduction Not long ago, I was startled to read in my morning paper that legislators in North Carolina were nearing consensus on how to compensate roughly 3,000 people who had been involuntarily sterilized under the state’s eugenics laws – the first of which was enacted in 1919, and the most recent of (...) which wasn’t repealed until 2003. Un... (shrink)

Abstractβ1,4‐galactosyltransferase is unusual among the glycosyltransferases in that it is found in two subcellular compartments where it performs two distinct functions. In the trans‐Golgi complex, galactosyltransferase participates in oligosaccharide biosynthesis, as do the other glycosyltransferases. On the cell surface, however, galactosyltransferase associates with the cytoskeleton and functions as a receptor for extracellular oligosaccharide ligands. Although we now know much regarding galactosyltransferase function in these two compartments, little is known about how it is targeted to these different sites. By cloning the (...) galactosyltransferase gene products, certain features of the protein have been identified that may be critical for its expression on the cell surface or retention within the Golgi complex. This article discusses recent studies which suggest that a cytoplasmic sequence unique to one galactosyltransferase isoform is required for targeting a portion of this protein to the plasma membrane, enabling it to function as a cell adhesion molecule. These findings allow one to manipulate surface galactosyltransferase expression, either positively or negatively, and perturb galactosyltransferase‐dependent cellular interactions during fertilization and development. (shrink)

Recent studies of early development in a number of ivertebrate and vertebrate species have suggested that growth factors and their receptors may play important roles in differentiation as well as cell proliferation. In the mouse embryo, the expression of the receptors for insulin and insulin‐like growth factors I and II (IGF‐I and ‐II) are temporally regulated. The ontogeny of receptor and ligand expression within the insulin and IGF gene family suggests that the very earliest stages of mammalian embryogenesis may be (...) subject to regulation by autocrine and paracrine factors from maternal and embryonic sources. (shrink)