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.
We present a new modeling framework for recognition memory and repetition priming based on signal detection theory. We use this framework to specify and test the predictions of 4 models: (a) a single-system (SS) model, in which one continuous memory signal drives recognition and priming; (b) a multiple-systems-1 (MS1) model, in which completely independent memory signals (such as explicit and implicit memory) drive recognition and priming; (c) a multiple-systems-2 (MS2) model, in which there are also 2 memory signals, but some (...) degree of dependence is allowed between these 2 signals (and this model subsumes the SS and MS1 models as special cases); and (d) a dual-process signal detection (DPSD1) model, 1 possible extension of a dual-process theory of recognition (Yonelinas, 1994) to priming, in which a signal detection model is augmented by an independent recollection process. The predictions of the models are tested in a continuous-identification-with-recognition paradigm in both normal adults (Experiments 1–3) and amnesic individuals (using data from Conroy, Hopkins, & Squire,2005). The SS model predicted numerous results in advance. These were not predicted by the MS1 model, though could be accommodated by the more flexible MS2 model. Importantly, measures of overall model fit favored the SS model over the others. These results illustrate a new, formal approach to testing theories of explicit and implicit memory. (shrink)
Do dissociations imply independent systems? In the memory field, the view that there are independent implicit and explicit memory systems has been predominantly supported by dissociation evidence. Here, we argue that many of these dissociations do not necessarily imply distinct memory systems. We review recent work with a single-system computational model that extends signal-detection theory (SDT) to implicit memory. SDT has had a major influence on research in a variety of domains. The current work shows that it can be broadened (...) even further in its range of application. Indeed, the single-system model that we present does surprisingly well in accounting for some key dissociations that have been taken as evidence for independent implicit and explicit memory systems. (shrink)
Introduction No consent for health and medical research is appropriate when the criteria for a waiver of consent are met, yet some ethics committees and data custodians still require informed consent. Methods A single-blind parallel-group randomised controlled trial: 1129 families of children born at a South Australian hospital were sent information explaining data linkage of childhood immunisation and hospital records for vaccine safety surveillance with 4 weeks to opt in or opt out by reply form, telephone or email. A subsequent (...) telephone interview gauged the intent of 1026 parents (91%) in relation to their actions and the sociodemographic differences between participants and non-participants in each arm. Results The participation rate was 21% (n=120/564) in the opt-in arm and 96% (n=540/565) in the opt-out arm (χ2 (1 df) = 567.7, p<0.001). Participants in the opt-in arm were more likely than non-participants to be older, married/de facto, university educated and of higher socioeconomic status. Participants in the opt-out arm were similar to non-participants, except men were more likely to opt out. Substantial proportions did not receive, understand or properly consider study invitations, and opting in or opting out behaviour was often at odds with parents' stated underlying intentions. Conclusions The opt-in approach resulted in low participation and a biased sample that would render any subsequent data linkage unfeasible, while the opt-out approach achieved high participation and a representative sample. The waiver of consent afforded under current privacy regulations for data linkage studies meeting all appropriate criteria should be granted by ethics committees, and supported by data custodians. Trial registration number Australian New Zealand Clinical Trials Registry ACTRN12610000332022. (shrink)
In cases of sudden, life-threatening illness where the chance of survival appears negligible to the admitting physician, this opinion is not always revealed during the initial meeting with the patient's relatives. Reasons as to why this withholding of the truth may be acceptable are explored through review of available evidence and personal reflection. Factors identified include: the importance of hope in families' coping mechanisms, and the instinct to preserve it; the fallibility of physicians' perception of poor prognosis in the early (...) phase of illness; the need to avoid large swings in relatives' expectations that occur when patients appear to rally during initial resuscitation; and the adverse effect that an atmosphere of hopelessness can have on the provision of medical care. A strategy for the staged disclosure of information and the confirmation of hopelessness is then described, the aim being to find a compromise between providing a true opinion about a patient's prognosis, and regard for the opposing factors described. (shrink)
In an adaptive clinical trial , key trial characteristics may be altered during the course of the trial according to predefined rules in response to information that accumulates within the trial itself. In addition to having distinguishing scientific features, adaptive trials also may involve ethical considerations that differ from more traditional randomized trials. Better understanding of clinical trial experts’ views about the ethical aspects of adaptive designs could assist those planning ACTs. Our aim was to elucidate the opinions of clinical (...) trial experts regarding their beliefs about ethical aspects of ACTs. (shrink)
This manuscript describes a pilot study in ethics education employing a problem-based learning approach to the study of novel, complex, ethically fraught, unavoidably public, and unavoidably divisive policy problems, called “fractious problems,” in bioscience and biotechnology. Diverse graduate and professional students from four US institutions and disciplines spanning science, engineering, humanities, social science, law, and medicine analyzed fractious problems employing “navigational skills” tailored to the distinctive features of these problems. The students presented their results to policymakers, stakeholders, experts, and members (...) of the public. This approach may provide a model for educating future bioscientists and bioengineers so that they can meaningfully contribute to the social understanding and resolution of challenging policy problems generated by their work. (shrink)
Stemming from a study of social aesthetics, in which public reaction to human physical appearance is addressed, the present analysis considers the practice of humans associating themselves with nonhuman animals on the basis of the latter's appearance. The study found these nonhuman animals are intended to serve as a positive reflection on the humans who deliberately choose them for their “special” traits, which the humans then utilize to enhance their own social standing. The study compares this to the same practice (...) used by humans to associate themselves with attractive humans and serves the similar purpose of amassing social status by virtue of the association. This paper explains the phenomenon in theoretical terms; namely, symbolic interactionism, paying special attention to impression-management and dramaturgy, along with other interactionist features of attribution and social exchange. Where available, the paper uses scholarly, empirical work on the topic, supplemented by popular media observations and news articles. Viewed from an interactionist perspective, these empirical and non-empirical examples provide a novel picture of human-and-animal society as a unidirectional, status-seeking interaction intended to benefit human actors. (shrink)
This note points out a conflict between some common intuitions about metaphysical possibility. On the one hand, it is appealing to deny that there are robust counterfactuals about how various physically impossible substances would interact with the matter that exists at our world. On the other hand, our intuitions about how concepts like MOUNTAIN apply at other metaphysically possible worlds seem to presuppose facts about ‘solidity’ which cash out in terms of these counterfactuals. I consider several simple attempts to resolve (...) this conflict and note they all fall short. (shrink)
This essay discusses four challenges posed to a global bioethics by articles on: divergent national policies on compensation of egg donors for IVF, efforts to advance the development of international guidelines for the management of neonates on the edge of viability, bioethics training workshops in Uganda, a bioethicist’s reflection on a visit to Pakistan. The article then discusses several approaches to developing a global bioethics and how these approaches might meet the four challenges. The essay concludes with discussion of the (...) author’s development of a navigational approach to policymaking for fractious bioethical policy problems and how this compares to other approaches to developing a global bioethics. (shrink)
This essay examines Harriet Jacobs’s Incidents in the Life of a Slave Girl in light of new archival findings on the medical practices of Dr. James Norcom . While critics have sharply defined the feminist politics of Jacobs’s sexual victimization and resistance, they have overlooked her medical experience in slavery and her participation in reform after escape. I argue that Jacobs uses the rhetoric of a woman-led health reform movement underway during the 1850s to persuade her readers to end slavery. (...) This essay reconstructs both contexts, revealing that Jacobs links enslaved women’s physical and sexual vulnerability with her female readers’ fears of male doctors’ threats to modesty and of their standard bleed-and-purge treatments. Jacobs illustrates that slavery damages women’s health as much as heroic medicine, and thus merits the political activism of her readers. Specifically, Jacobs dramatizes her conflicts with the rapacious physician-master at moments that are crucial to women’s health: marriage, pregnancy, childbirth, and motherhood. Ultimately, this essay advances a new understanding of the role of health reform in social change: it galvanized other movements such as women’s rights and abolition, particularly around issues of bodily autonomy for women and African Americans. (shrink)
This note points out a conflict between some common intuitions about metaphysical possibility. On the one hand, it is appealing to deny that there are robust counterfactuals about how various physically impossible substances would interact with the matter that exists at our world. On the other hand, our intuitions about how concepts like MOUNTAIN apply at other metaphysically possible worlds seem to presuppose facts about `solidity’ which cash out in terms of these counterfactuals. I consider several simple attempts to resolve (...) this conflict and note they all fall short. (shrink)
In The Ethics of Food, Gregory E. Pence brings together a collection of voices who share the view that the ethics of genetically modified food is among the most pressing societal questions of our time. This comprehensive collection addresses a broad range of subjects, including the meaning of food, moral analyses of vegetarianism and starvation, the safety and environmental risks of genetically modified food, issues of global food politics and the food industry, and the relationships among food, evolution, and human (...) history. (shrink)
The use of networks as an explanatory framework is widespread in the literature that surrounds technology and information society. The three books reviewed here — The Wealth of Networks by Yochai Benkler, Decoding Liberation: The Promise of Free and Open Source Software by Samir Chopra and Scott Dexter, and The Exploit: A Theory of Networks by Alexander Galloway and Eugene Thacker — all make a claim to the novelty that networks provide to their subject matter. By looking closely at the (...) way in which the network is utilized in each of the texts, this review attempts to question the extent to which a network analysis can ground a claim about a discontinuity in technology, society or economics. (shrink)
In the philosophy of science there has traditionally been a tendency to regard physics as the incarnation of science per se. Accordingly, the status of other disciplines is evaluated then with respect to their ability to produce laws resembling those of physics. This view has yielded a considerable bias in the discussion of historical laws. Philosophers as well as historians have tended to discuss such laws mostly with reference to the situation in physics; this often led to either one of (...) two conclusions, namely that history is epistemologically completely separated from natural science, because it does not have universal laws, or that the ultimate goal of the study of history must be the formulation of such universal laws. I would maintain that neither conclusion is necessary. To substantiate this position, aspects of laws in nature are discussed. One aspect being often neglected is the fact that there are many cases of statistical laws in nature; there is no close link between laws and determinism. Moreover, there are natural systems which have a history, i.e. systems which are, like human history, shaped by irreversible, singular events. One important case is biological evolution and accordingly I discuss the relation between evolutionary theory and historiography. However, since we are part of the living world, one could also ask whether the laws of evolution are of direct relevance for understanding our history, in addition to the methodological similarities between the two fields. This issue of history as evolution is being investigated in detail in the final section of the paper. (shrink)
A terminally ill man requests that his life be brought to a peaceful end by the doctor overseeing his care. The doctor, an atheist, regretfully declines. The patient, unsatisfied by the answer and increasingly desperate for relief, presses the doctor for an explanation. During the ensuing dialogue the philosophical, ethical and emotional arguments brought to bear by both the doctor and the patient are dissected.
The motives behind the author’s decision to resuscitate a patient are examined. This is prompted by the realisation that he ignored the man’s apparent wish not to be saved for fear of criticism from both relatives and colleagues. The way in which decisions are made when the interests of the doctor and the patient clash are briefly explored. Self interest may play a more significant role than is commonly accepted.
This is an imagined dialogue between the ghost of a young suicide and an old schoolfriend. The living discussant, a doctor now, regrets that he did not realise how deeply troubled his friend was, and wants to know if and in what way he could have dissuaded the depressed schoolboy from his irrevocable decision. The ghost, however, confident in death, free from mental anguish, challenges the doctor’s presumptions. What right does he, does society have, to stop, detain, dissuade, and “cure” (...) those who wish to kill themselves? The issues of sanity, free will, and societal judgment are explored in an encounter that can never take place, but which sheds light on the thought processes of the suicidal. (shrink)
Nathaniel Hawthorne’s short stories “The Birthmark” (1843) and “Rappaccini’s Daughter” (1844) encourage critical thinking about science and scientific research as forms of social power. In this collaborative activity, students work in small groups to discuss the ways in which these stories address questions of human experimentation, gender, manipulation of bodies, and the role of narrative in mediating perceptions about bodies. Students collectively adduce textual evidence from the stories to construct claims and present a mini-argument to the class, thereby strengthening their (...) skills in communication and cooperative interpretation of ethical dilemmas. This exercise is adaptable to shorter and longer periods of instruction, and it is ideal for instructors who collaborate across areas of expertise. (shrink)