Biological kin share up to half of their genetic material, including predisposition to disease. Thus, variants of clinical significance identified in each individual’s genome can implicate an exponential number of relatives at potential risk. This has renewed the dilemma over family access to research participant’s genetic results, since prevailing US practices treat these as private, controlled by the individual. These individual-based ethics contrast with the family-based ethics – in which genetic information, privacy, and autonomy are considered to be familial – (...) endorsed in UK genomic medicine and by participants in a multi-method study of US research participants presented here. The dilemma reflects a conflict between US legal and ethical frameworks that privilege “the individual” and exclude “the family” versus actual human genetics that are simultaneously individual and familial. Can human genetics succeed in challenging bioethics’ hegemonic individualism to recognize and place the family at the center of the room where bioethics happens? (shrink)

Background: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands’ biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband’s results to family members, including after the proband’s death? Methods: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. (...) Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. Results: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband’s genomic results relevant to family members’ health ought to be offered. While informants endorse each individual’s choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. Conclusions: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy—without attention to how the broad social and cultural context shapes preferences within families—cannot be the sole foundation of policy. (shrink)

Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.

An alternative to objectifying approaches to understanding Post-traumatic Stress Disorder grounded in hermeneutic phenomenology is presented. Nurses who provided care for soldiers injured in the Iraq and Afghanistan wars, and sixty-seven wounded male servicemen in the rehabilitation phase of their recovery were interviewed. PTSD is the one major psychiatric diagnosis where social causation is established, yet PTSD is predominantly viewed in terms of the usual neuro-physiological causal models with traumatic social events viewed as pathogens with dose related effects. Biologic models (...) of causation are applied reductively to both predisposing personal vulnerabilities and strengths that prevent PTSD, such as resiliency. However, framing PTSD as an objective disease state separates it from narrative historical details of the trauma. Personal stories and cultural meanings of the traumatic events are seen as epiphenomenal, unrelated to the understanding of, and ultimately, the therapeutic treatment of PTSD. Most wounded service members described classic symptoms of PTSD: flashbacks, insomnia, anxiety etc. All experienced disturbance in their sense of time and place. Rather than see the occurrence of these symptoms as decontextualized mechanistic reverberations of war, we consider how these symptoms meaningfully reflect actual war experiences and sense of displacement experienced by service members. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

Wilfrid Sellars made profound and lasting contributions to nearly every area of philosophy. The aim of this collection is to highlight the continuing importance of Sellars’ work to contemporary debates. The contributors include several luminaries in Sellars scholarship, as well as members of the new generation whose work demonstrates the lasting power of Sellars’ ideas. Papers by O’Shea and Koons develop Sellars’ underexplored views concerning ethics, practical reasoning, and free will, with an emphasis on his longstanding engagement with Kant. Sachs, (...) Hicks and Pereplyotchik relate Sellars’ views of mental phenomena to current topics in cognitive science and philosophy of mind. Fink, deVries, Price, Macbeth, Christias, and Brandom grapple with traditional Sellarsian themes, including meaning, truth, existence, and objectivity. Brandhoff provides an original account of the evolution of Sellars’ philosophy of language and his project of "pure pragmatics". The volume concludes with an author-meets-critics section centered around Robert Brandom’s recent book, From Empiricism to Expressivism: Brandom Reads Sellars, with original commentaries and replies. (shrink)

Autism is one of the most compelling, controversial, and heartbreaking cognitive disorders. It presents unique philosophical challenges as well, raising intriguing questions in philosophy of mind, cognitive science, and philosophy of language that need to be explored if the autistic population is to be responsibly served. Starting from the "theory of mind" thesis that a fundamental deficit in autism is the inability to recognize that other persons have minds, Deborah R. Barnbaum considers its implications for the nature of consciousness, (...) our understanding of the consciousness of others, meaning theories in philosophy of language, and the modality of mind. This discussion lays the groundwork for consideration of the value of an autistic life, as well as the moral theories available to persons with autism. The book also explores questions about genetic decision making, research into the nature of autism, and the controversial quest for a cure. This is a timely and wide-ranging book on a disorder that commends itself to serious ethical examination. (shrink)

Laspro et al. (2024) present an insightful survey of ethical issues emerging in first-in-human whole eye transplants (WET). Their discussion is applicable to a broad range of first-in-human surgica...

The health care industry has moved at a rapid pace away from paper records to an electronic platform across almost all sectors — much of it at the encouragement and insistence of the federal government. Such rapid expansion has increased exponentially the risk to individuals in the privacy of their data and, increasingly, to their physical well-being when medical records are inaccessible through ransomware attacks. Recognizing the unique and critical nature of medical records, the United States Congress established the Health (...) Care Industry Cybersecurity Task Force under the Cybersecurity Information Sharing Act of 2015 for the purpose of reviewing cybersecurity risks within the health care industry and identifying who will lead and coordinate efforts to address such risks among the various agencies. The Task Force has since issued a report setting forth six high-level imperatives that the health care industry needs to achieve in order to combat cybersecurity, and, notably, many of the vulnerabilities plaguing the industry identified in the Report as requiring correction are not necessarily related to specific flaws in the current cybersecurity framework, but rather susceptibilities presented by the infrastructure and associated regulatory regime that has evolved over the last few decades over the health care industry generally. That is, the current health care infrastructure by its nature exacerbates cybersecurity risk. Between a lack of information sharing of industry threats, risks, and mitigations, disparate leadership and governance goals for cybersecurity, the confluence and contradiction of existing federal and state laws, fragmentation in the fee-for-service delivery system, lack of care coordination, and disparate resources across and among sectors, the industry suffers from heightened cyber risk. Solutions that are reactive to problems within the current infrastructure will likely have little long term impact toward reducing cybersecurity vulnerabilities because they do not address the underlying system challenges. All of these confluences causes one to wonder whether if in fact the current health care delivery infrastructure is a contributing factor to the incidents of cybersecurity attacks and the exorbitant costs associated with resolving data breaches, should Congress look not just to curb breach incidents, but to address root cause systematic challenges in the health industry infrastructure that create increased exposure of cybersecurity threats? This article argues that cybersecurity risks will continue to be heightened and more costly to the health care industry as compared to other industries unless and until some general system redesign is achieved that allows for greater sharing of resources among industry participants to ensure the same protections are implemented at all levels of the industry, which can be strengthened through greater interoperability of systems across the health care industry; and increased focus and attention on the importance of cybersecurity issues as a priority among system reforms. (shrink)

Original chapters complement anthologized readings on topics in research ethics such as informed consent, the use of humans and animals in research, research misconduct, and conflicts of interest.

Being empathetic (or compassionate) is an important trait that allows for those working in health care professions to successfully analyze cases and provide patients with adequate care. One standard and enormously important way to try and teach empathy involves the use of case studies. The case-study approach, however, has some unique limitations in teaching empathy. This paper describes an activity where students are asked to imagine that they have contracted a specific disease (one that lasts the entire semester) through a (...) process of random (or lottery) assignment. Having contracted a disease, students are then tasked with taking on the persona of that patient. In writing and adopting the perspective of that patient, students are better able to learn the kind of empathy needed to be a successful health care professional. (shrink)

This essay argues for the relevance of the history of family life to the history of science, taking the example of the Exners of Vienna. The Exners were an influential case of the nineteenth‐century European phenomenon of the “scientific dynasty.” The focus here is on their collaborative research on color theory at the turn of the twentieth century. At first glance, this project looks like a reactionary strike against aesthetic innovation, a symptom of what historians assume was an unbridgeable gulf (...) between scientific reason and artistic modernism. We can better understand the Exners’ motivations by situating this research at the intersection of the family's public and private lives. The domestic context sheds light on their use of such scientific terms as “subjective,” “normal,” and “universal,” providing a more nuanced sense of what rationality really meant in fin‐de‐siècle Vienna. (shrink)

‘Supererogation’ is the notion of going beyond the call of duty. The concept of supererogation has received scrutiny in ethical theory, as well as clinical bioethics. Yet, there has been little attention paid to supererogation in research ethics. Supererogation is examined in this paper from three perspectives: (1) a summary of two analyses of ‘supererogation’ in moral theory, as well as an examination as to whether acts of supererogation exist; (2) a discussion of supererogation in clinical practice, including arguments that (...) both physicians and patients can practice acts of supererogation; (3) a discussion as to why researchers, qua researchers, are not routinely recognized to perform acts of supererogation, while at the same time the very nature of research subject participation involves supererogation. The article concludes by considering three examples of supererogation on the part of researchers, with a plea that researchers’ supererogatory actions be recognized as such. (shrink)

ArgumentBetween 1878 and 1880, Switzerland, Italy, and Japan initiated the world's first national earthquake commissions, but only the Swiss made ordinary citizens a vital part of this undertaking. This paper examines the texture of communication between Swiss scientists and lay observers and traces the development of a language for seismology that was simultaneously scientific and vernacular. This is the story of an aborted dialogue between scientists and citizens about living with environmental risk, an alternative abandoned on the way to the (...) increasingly technical science of the twentieth century. (shrink)

ArgumentWhat, if anything, uniquely defines the mountain as a “laboratory of nature”? Here, this question is considered from the perspective of meteorology. Mountains played a central role in the early history of modern meteorology. The first permanent year-round high-altitude weather stations were built in the 1880s but largely fell out of use by the turn of the twentieth century, not to be revived until the 1930s. This paper considers the unlikely survival of the Sonnblick observatory in the Austrian Alps. By (...) examining the arguments of the Sonnblick's critics and defenders, it reveals a seemingly paradoxical definition of the mountain as a space that simultaneously maximized isolation and communication. Drawing on the social and environmental history of the Alps, it shows how the Sonnblick came to appear as the perfect embodiment of this paradox. (shrink)

The Anthropocene is the signature concept of the new discipline of Earth System science (ESS). This essay argues that ESS is, first and foremost, a framework for interdisciplinary collaboration, and it considers the advantages and disadvantages to historians of adopting this framework. The authors conclude that the epistemological framework of ESS devalues the role of historical interpretation and evinces a self-defeating tendency toward Holocene nostalgia. A historically informed response to the present environmental crisis needs to attend to historical forces that (...) remain invisible to ESS, such as the technological agency of nondominant actors. (shrink)

For historians of science, earthquakes may well have an air of the exotic. Often terrifying, apparently unpredictable, and arguably even more deadly today than in a pre-industrial age, they are not a phenomenon against which scientific progress is easy to gauge. Yet precisely because seismic forces seem so uncanny, even demonic, naturalizing them has been one of the most tantalizing and enduring challenges of modern science. Earthquakes have repeatedly shaken not just human edifices but the foundations of human knowledge. They (...) have been known to cast doubt on divine providence, on the predictive ability of the sciences, and on the capacity of the human mind to learn from an experience of sheer terror. Most recently, the Japanese earthquake and tsunami of 2011 have forced nuclear experts around the world to confront the limits of their knowledge and the vulnerability of their best-laid plans. (shrink)

Since the passage of Medicare, the self-regulation characteristic of professionalism in health care has come under steady assault. While Canadian physicians chose to relinquish financial autonomy, they have enjoyed far greater professional autonomy over their medical judgments than their U.S. counterparts who increasingly have their practices micromanaged. The Affordable Care Act illustrates the ways that managerial strategies and a market model of health care have shaped the financing and delivery of health care in the U.S., often with little or no (...) evidence of their effectiveness. (shrink)

This essay describes how longstanding conceptions of professionalism in American medical care came under attack in the decades since the enactment of Medicare in 1965 and how the reform strategy and core provisions of the 2010 Affordable Care Act illustrate the weakening of those ideas and the institutional practices embodying them.The opening identifies the dominant role of physicians in American medical care in the two decades after World War II. By the time Medicare was enacted in 1965, associations of American (...) physicians were almost completely in charge of medical education, specialist certification, and the enforcement of professional norms on their members. Who could be a doctor, what education and training would be required, and what collegial oversight was operative was first a professional matter and only secondly implicated the state through malpractice or major corporations via the employment of physicians. (shrink)

This article offers an historical-materialist account of the coup in Honduras on 28 June 2009, which ousted democratically elected President Manuel Zelaya. It draws on over two dozen interviews with members of theFrente Nacional de la Resistencia Popular[National Front of Popular Resistance, FNRP], and participation in numerous marches and assemblies over two periods of fieldwork – January 2010, and June–July 2011. The paper steps back in time to provide an historical cartography of the basic material structures of the Honduran economy (...) and its integration into the world market, as well as the geopolitical role it played as a launching pad for Ronald Reagan’s counter-insurgency campaigns against guerrilla forces elsewhere in the region during the 1980s. We show how the defeat of mass guerrilla insurgencies in Guatemala and El Salvador, as well as the triumph over the Sandinista government in Nicaragua by 1990, allowed for the neoliberal pacification of Central America as a whole, including Honduras. We further demonstrate how the centre-leftist Manuel Zelaya, elected to the Honduran presidency in 2006, modestly encroached upon neoliberal orthodoxy and forged geopolitical alliances with left and centre-left governments elsewhere in the region, laying the bases for his violent overthrow. Finally, the paper traces the origins, trajectory, and heterogeneity of the resistance that emerged almost immediately after the coup had been carried out. (shrink)

Many business and government institutions appear to have failed in meeting society’s expectations of them. Continuing scandals and failures, as well as an increasingly obvious lack of responsibility to customers, have caused communities to question the probity and operation of these organisations. Consequently, “social licence to operate” is becoming an increasingly common process and one which demands a change in management philosophy and behaviour in our institutions. Improving the quality of responsible management practice is a critical element in this new (...) management philosophy, and which demands an intense focus on including ethical considerations in the core management competence of decision-making. We draw on a combined 100-plus years of international consulting experience, “C“ and senior executive work experience, and academic research to present a practical framework for responsible management practice which, we believe, can also form the foundation for the required organisational cultural transformation required of many existing organisations. (shrink)

Many business and government institutions appear to have failed in meeting society’s expectations of them. Continuing scandals and failures, as well as an increasingly obvious lack of responsibility to customers, have caused communities to question the probity and operation of these organisations. Consequently, “social licence to operate” is becoming an increasingly common process and one which demands a change in management philosophy and behaviour in our institutions. Improving the quality of responsible management practice is a critical element in this new (...) management philosophy, and which demands an intense focus on including ethical considerations in the core management competence of decision-making. We draw on a combined 100-plus years of international consulting experience, “C“ and senior executive work experience, and academic research to present a practical framework for responsible management practice which, we believe, can also form the foundation for the required organisational cultural transformation required of many existing organisations. (shrink)

In this undergraduate textbook Lewis R. Gordon offers the first comprehensive treatment of Africana philosophy, beginning with the emergence of an Africana consciousness in the Afro-Arabic world of the Middle Ages. He argues that much of modern thought emerged out of early conflicts between Islam and Christianity that culminated in the expulsion of the Moors from the Iberian Peninsula, and from the subsequent expansion of racism, enslavement, and colonialism which in their turn stimulated reflections on reason, liberation, and the (...) meaning of being human. His book takes the student reader on a journey from Africa through Europe, North and South America, the Caribbean, and back to Africa, as he explores the challenges posed to our understanding of knowledge and freedom today, and the response to them which can be found within Africana philosophy. (shrink)

As the implementation of new approaches and procedures of medical ethics is as complex and resource-consuming as in other fields, strategies and activities must be carefully planned to use the available means and funds responsibly. Which facilitators and barriers influence the implementation of a medical ethics decision-making model in daily routine? Up to now, there has been little examination of these factors in this field. A medical ethics decision-making model called METAP was introduced on three intensive care units and two (...) geriatric wards. An evaluation study was performed from 7 months after deployment of the project until two and a half years. Quantitative and qualitative methods including a questionnaire, semi-structured face-to-face and group-interviews were used. Sixty-three participants from different professional groups took part in 33 face-to-face and 9 group interviews, and 122 questionnaires could be analysed. The facilitating factors most frequently mentioned were: acceptance and presence of the model, support given by the medical and nursing management, an existing or developing ethics culture, perception of a need for a medical ethics decision-making model, and engaged staff members. Lack of presence and acceptance, insufficient time resources and staff, poor inter-professional collaboration, absence of ethical competence, and not recognizing ethical problems were identified as inhibiting the implementation of the METAP model. However, the results of the questionnaire as well as of explicit inquiry showed that the respondents stated to have had enough time and staff available to use METAP if necessary. Facilitators and barriers of the implementation of a medical ethics decision-making model are quite similar to that of medical guidelines. The planning for implementing an ethics model or guideline can, therefore, benefit from the extensive literature and experience concerning the implementation of medical guidelines. Lack of time and staff can be overcome when people are convinced that the benefits justify the effort. (shrink)