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.

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (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)

A collection of essays on politics, philosophy, and the crisis of Marxism, referring back to Althusser's theoretical initiatives of the late 1970s and the Portuguese revolution of 1974.

Charlie Croker, a self-made real estate tycoon, ex-Georgia Tech football star, horseback rider, quail-hunter, snakecatcher, and good old boy from Baker county Georgia, is the protagonist in Tom Wolfe’s latest novel, the deliciously provocative A Man in Full (New York: Farrar Straus Giroux, 1998).  In this article I examine the evolving conception of manhood in Wolfe’s novel.  Two different models of manliness will be delineated and compared. The first model—represented by Charlie Croker—gradually weakens and is replaced by the (...) second model—represented by Conrad Hensley. My aim is to show how Stoicism serves to critique the first model and articulate the second.  Stoicism, I argue, provides the deliverance of both Hensley and his convert Croker, while at the same time transforming the conception of manliness explored in A Man in Full. (shrink)

TOC -/- 0. Introduction (SN/CW) -/- I. Revisiting vitalist themes in 19th-century science -/- 1. Guido Giglioni (Warburg Institute) – Jean-Baptiste Lamarck and the Place of Irritability 2. in the History of Life and Death 3. Joan Steigerwald (York) – Rethinking Organic Vitality in Germany at the Turn of the Nineteenth Century 4. Juan Rigoli (Geneva) –The “Novel of Medicine” 5. Sean Dyde (Cambridge) – Life and the Mind in Nineteenth-Century Britain. Somaticism in the Wake of Phrenology. -/- II. Twentieth (...) century debates on vitalism in science and philosophy -/- 6. Brian Garrett (McMaster) – Vitalism versus Emergent Materialism 7. Christophe Malaterre (Paris) – Life as an Emergent Phenomenon: from an Alternative to Vitalism to an Alternative to Reductionism 8. Sebastian Normandin (Montreal) – Wilhelm Reich: Vitalism and Its Discontents 9. Chiara Elettra Ferrario (Wellington) and Luigi Corsi (Pisa) – Kurt Goldstein: Vitalism and the Organismic Approach 10. Giuseppe Bianco (Paris/Warwick) – The Origins of Canguilhem’s “Vitalism”. Against the Anthropology of Irritation -/- III. Vitalism and contemporary biological developments -/- 11. William Bechtel (UCSD) — Dynamic Mechanistic Explanation: Addressing the Vitalists’ Objections to Mechanistic Science 12. John Dupré and Maureen O’Malley (Exeter) – Varieties of living things: Life at the intersection of lineage and metabolism 13. J. Scott Turner (Syracuse) – Homeostasis and the forgotten vitalist roots of adaptation -/- . (shrink)

School choice has lately risen to the top of the list of potential solutions to America's educational problems, particularly for the poor and the most disadvantaged members of society. Indeed, in the last few years several states have held referendums on the use of vouchers in private and parochial schools, and more recently, the Supreme Court reviewed the constitutionality of a scholarship program that uses vouchers issued to parents. While there has been much debate over the empirical and methodological aspects (...) of school choice policies, discussions related to the effects such policies may have on the nation's moral economy and civil society have been few and far between. School Choice, a collection of essays by leading philosophers, historians, legal scholars, and theologians, redresses this situation by addressing the moral and normative side of school choice.The twelve essays, commissioned for a conference on school choice that took place at Boston College in 2001, are organized into four sections that consider the relationship of school choice to equality, moral pluralism, institutional ecology, and constitutionality. Each section consists of three essays followed by a critical response. The contributors are Patrick McKinley Brennan, Charles L. Glenn, Amy Gutmann, David Hollenbach, S. J., Meira Levinson, Sanford Levinson, Stephen Macedo, John T. McGreevy, Martha Minow, Richard J. Mouw, Joseph O'Keefe, S. J., Michael J. Perry, Nancy L. Rosenblum, Rosemary C. Salomone, Joseph P. Viteritti, Paul J. Weithman, and Alan Wolfe. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Old Orders for New Ecology, Animal Rights, and the Poverty of HumanismCary Wolfe (bio)Luc Ferry. The New Ecological Order. Trans. Carol Volk. Chicago: U of Chicago P, 1995.1Early on in The New Ecological Order, the French philosopher Luc Ferry characterizes the allure and danger of ecology in the postmodern moment. What separates it from various other issues in the intellectual and political field, he writes, is thatit can call (...) itself a true “world vision,” whereas the decline of political utopias, but also the parcelization of knowledge and the growing “jargonization” of individual scientific disciplines, seemed to forever prohibit any plan for the globalization of thought.... At a time when ethical guide marks are more than ever floating and undetermined, it allows the unhoped-for promise of rootedness to form, an objective rootedness, certain of a new moral ideal.[xx]As we shall see, for Ferry—a staunch liberal humanist in the Kantian if not quite Cartesian tradition—this vision conceals a danger to which contemporary European intellectuals are especially sensitive: not holism, nor even moralism, exactly, but that far more charged and historically freighted thing, totalitarianism. Ferry’s concern is that such “world visions,” incarnated in contemporary environmentalism in movements such as Deep Ecology and ecofeminism, threaten “[o]ur entire democratic culture,” which “since the French Revolution, has been marked, for basic philosophical reasons, by the glorification of uprootedness, or innovation” [xxi]. Ferry’s thesis—it becomes quite explicit in his comparison of environmental legislation under the Third Reich with tenets of Deep Ecology in the book’s second section—is that Deep Ecology and its ilk have moved in to occupy the space left open by the passing of the political imaginaries of fascism and communism, so that denunciations of liberalism (and its corollary in political praxis, reformism) may now be unmasked for what they are: critiques “in the name of nostalgia, or, on the contrary, in that of hope: either the nostalgia for a lost past, for national identity flouted by the culture of rootlessness, or revolutionary hope in a radiant future, in a classless and free society” [xxvi]. To which Ferry responds—literally—“Grow up!” Late in the book, he tells us that we must see through “the adult development of the secular and democratic universe” [137] by rejecting totalizing revolutionary visions of the sort purveyed by Deep Ecology, and by adhering instead to liberal reformism, “the only [End Page 21] position consistent with leaving the world of childhood” [138].Ferry is certainly right to draw our attention to the often uncritical nostalgia and romantic holism of some varieties of environmental thought—problems that have been noted before by critics from points on the map very different politically from Ferry’s avowed liberal humanism. And it is certainly understandable, given the historical context, that he would join a long list of other European intellectuals in pointing out the manifold dangers to democratic society of totalizing moral schemes—dangers often represented for liberal intellectuals like Ferry by the rise of the Greens in European politics. 1 We do well to remember, too (as Fredric Jameson and others have pointed out), that for European intellectuals such as Ferry, liberalism retains, for understandable historical reasons, a viability and a promise about which many American intellectuals are skeptical or even jaded. European intellectuals, conditioned by the experience of fascist authoritarianism and the strong but problematic presence historically of the Communist party in social and intellectual life, may find in liberalism a refreshing and indeed radical democratic openness and dynamism, while American intellectuals, conditioned to the absence of any other major political contenders, have long since grown accustomed to liberalism as the name for that “end of ideology” position which, as Jameson puts it, “can function more effectively after its own death as an ideology, realizing itself in its most traditional form as a commitment to the market system that has become sheer common sense and no longer a political program” [249, my emphasis].But in defending democratic difference, everything hinges, of course, on precisely how such terms are framed and how difference is articulated—an index of which often may be found in how its imagined... (shrink)

What is theHistorical epistemologyhistorical epistemologyGayon, JeanOn historical epistemology of the life sciences? In what way does it differ from historico-philosophical reflection on “foundational” or “conceptual” issues in the sciences tout court? This is a question to which Jean Gayon and his mentor Georges CanguilhemCanguilhem, Georges devoted a considerable amount of effort, yielding somewhat different answers, as I will try to show. One obvious difference, as P.-O. MéthotMéthot, Pierre-Olivier has shown, is Gayon’s appropriation of anglophone philosophy of biology; another is Canguilhem'sCanguilhem, (...) Georges way of presenting his work as restricted to contextualized, historicist claims while in fact it is shot through with strong normative (and at times metaphysical) claims on Life, normativity, and value. In this essay I reflect on how to conduct historical epistemologiesHistorical epistemology of the life sciences, focusing on two interrelated cases I have worked on in the past: vitalismVitalism (history of) and the constitution of biology. (shrink)

The causal compatibility question asks whether a given causal structure graph — possibly involving latent variables — constitutes a genuinely plausible causal explanation for a given probability distribution over the graph’s observed categorical variables. Algorithms predicated on merely necessary constraints for causal compatibility typically suffer from false negatives, i.e. they admit incompatible distributions as apparently compatible with the given graph. In 10.1515/jci-2017-0020, one of us introduced the inflation technique for formulating useful relaxations of the causal compatibility problem in terms of (...) linear programming. In this work, we develop a formal hierarchy of such causal compatibility relaxations. We prove that inflation is asymptotically tight, i.e., that the hierarchy converges to a zero-error test for causal compatibility. In this sense, the inflation technique fulfills a longstanding desideratum in the field of causal inference. We quantify the rate of convergence by showing that any distribution which passes the nth-order inflation test must be On−1/2$\begin{array}{} \displaystyle {O}{\left(n^{{{-}{1}}/{2}}\right)} \end{array}$-close in Euclidean norm to some distribution genuinely compatible with the given causal structure. Furthermore, we show that for many causal structures, the (unrelaxed) causal compatibility problem is faithfully formulated already by either the first or second order inflation test. (shrink)

Most philosophical explorations of responsibility discuss the topic solely in terms of metaphysics and the "free will" problem. By contrast, these essays by leading philosophers view responsibility from a variety of perspectives -- metaphysics, ethics, action theory, and the philosophy of law. After a broad, framing introduction by the volume's editors, the contributors consider such subjects as responsibility as it relates to the "free will" problem; the relation between responsibility and knowledge or ignorance; the relation between causal and moral responsibility; (...) the difference, if any, between responsibility for actions and responsibility for omissions; the metaphysical requirements for making sense of "collective" responsibility; and the relation between moral and legal responsibility. The contributors include such distinguished authors as Alfred R. Mele, John Martin Fischer, George Sher, and Frances Kamm, as well as important rising scholars. Taken together, the essays in _Action, Ethics, and Responsibility_ offer a breadth of perspectives that is unmatched by other treatments of the topic. Contributors: Joseph Keim Campbell, David Chan, Randolph Clarke, E.J. Coffman, John Martin Fischer, Helen Frowe, Todd Jones, Frances Kamm, Antti Kauppinen, Alfred R. Mele, Michael O'Rourke, Paul Russell, Robert F. Schopp, George Sher, Harry S. Silverstein, Saul Smilansky, Donald Smith, Charles T. Wolfe The hardcover edition does not include a dust jacket. (shrink)

Implant ethics is defined here as the study of ethical aspects of the lasting introduction of technological devices into the human body. Whereas technological implants relieve us of some of the ethical problems connected with transplantation, other difficulties arise that are in need of careful analysis. A systematic approach to implant ethics is proposed. The major specific problems are identified as those concerning end of life issues (turning off devices), enhancement of human capabilities beyond normal levels, mental changes and personal (...) identity, and cultural effects. (shrink)

This book explains the notational system NUSAP (Numeral, Unit, Spread, Assessment, Pedigree) and applies it to several examples from the environmental sciences.

Extended antipaternalism means the use of antipaternalist arguments to defend activities that harm (consenting) others. As an example, a smoker’s right to smoke is often invoked in defence of the activities of tobacco companies. It can, however, be shown that antipaternalism in the proper sense does not imply such extended antipaternalism. We may therefore approve of Mill’s antipaternalist principle (namely, that the only reason to interfere with someone’s behaviour is to protect others from harm) without accepting activities that harm (consenting) (...) others. This has immediate consequences for the ethics of public health. An antipaternalist need not refrain from interfering with activities such as the marketing of tobacco or heroin, boxing promotion, driving with unbelted passengers, or buying sex from “voluntary” prostitutes. (shrink)

The history of the Russian Old Believers who lived in Ukraine, as well as the question of the main methods and features of the power struggle with representatives of this peculiar ethno-confessional group and the ways of their adaptation to the conditions that existed in the Russian Empire in the middle of the XIX century remain a little researched topic. So, we can talk about the scientific relevance of a particular problem.

Tout s’est passé très vite, prenant l’Église au dépourvu. Le mouvement pour la reconnaissance des mariages et des unions civiles entre personnes du même sexe a connu un succès extraordinaire. La hiérarchie de l’Église catholique oppose une fin de non-recevoir à toute reconnaissance positive des couples homosexuels, en invoquant une morale sexuelle qu’on dit ancienne et invariable,..

The Difference between Belief and Knowledge. The assumption that knowledge can be defined in terms of belief is considered to be mistaken. Since Gettier problems are shown to be misconstrued, the question cannot arise whether his conditions for knowledge are sufficient for claiming ``knowledge is justified true belief''. Ayers' conditions for knowledge in addition with a specific stipulation proof to be instructive for elaborating the differences between knowledge and belief.