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)

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)

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)

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)

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)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)

A convent philosophy -- Mère Angélique Arnauld : virtue and grace -- Mère Agnès Arnauld : adoration and right -- Mère Angélique de Saint-Jean Arnauld d'Andilly : persecution and resistance -- A nocturnal philosophy.

Stemming from two conferences, held in 1994, and 1996, Prophecy and Diplomacy: The Moral Doctrine of John Paul II explores the general orientations and the specific applications of the moral teaching of Pope John Paul II. The first part of the book places the Pope's moral theory within a broader theological framework, attempting to identify the overarching philosophical and theological attitudes that shape the Pope's fundamental moral perspective. In part two, the work studies the Pope's teaching in the areas of (...) applied ethics. Both the major lecturers and the respondents focus upon those areas of applied ethics that have provoked the greatest tension between the magisterium and the academy and between the Church and the state in the West. The volume concludes by presenting a homily that places the ethics of John Paul II within a spiritual framework of repentance and redemption. The Pope's moral teaching is not an academic survey of ethical themes. Nor is it a Pelagian call to human self-regeneration. The ultimate truth concerning human conduct and moral judgement emerges only with the proclamation of God's grace. (shrink)

In three encyclicals, Pius XI denounces the abuses of totalitarian regimes: fascism, national socialism, and communism. The Pope argues that the motor of the human rights abuses operative in each regime is idolatry. Totalitarian movements have placed respectively the state, race, and class in the place of God. The prophetic defense of the rights of the persecuted entails a theological critique of the idolatrous substitutes for God and of the counterfeit Christianity fabricated by totalitarian movements.

Based on a close reading of Fides et Ratio and Salvifici Doloris, this paper argues that John Paul II challenges the power and range of metaphysical reason in certain neglected passages. Such challenges include the critique of the idolatry of philosophical systems, the emphasis on the irreducible mystery of God, and the rejection of efforts to construct a theodicy in the face of human suffering. The challenge especially emerges in John Paul II’s emphasis on the Cross as a stumbling block (...) to metaphysical affirmation. Against certain rationalistic interpretations of the Pope, this paper attempts to excavate the critique of metaphysical reason embedded in John Paul II’s arguments on the limits of philosophical speculation. (shrink)

Based on a close reading of Fides et Ratio and Salvifici Doloris, this paper argues that John Paul II challenges the power and range of metaphysical reason in certain neglected passages. Such challenges include the critique of the idolatry of philosophical systems, the emphasis on the irreducible mystery of God, and the rejection of efforts to construct a theodicy in the face of human suffering. The challenge especially emerges in John Paul II’s emphasis on the Cross as a stumbling block (...) to metaphysical affirmation. Against certain rationalistic interpretations of the Pope, this paper attempts to excavate the critique of metaphysical reason embedded in John Paul II’s arguments on the limits of philosophical speculation. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Reviewed by:The Political Philosophy of Fénelon by Ryan Patrick HanleyJohn J. Conley SJRyan Patrick Hanley. The Political Philosophy of Fénelon. Oxford: Oxford University Press, 2020. Pp. xvi + 306. Hardback, $41.95.In his monograph, Ryan Patrick Hanley offers a revisionist interpretation of the political philosophy of François de Salignac de la Mothe-Fénelon, archbishop of Cambrai. A series of Enlightenment commentators (Montesquieu, Rousseau, Hume, Jefferson) and their progeny have hailed Fénelon (...) as a political subversive who boldly attacked the injustices of the reign of Louis XIV and who prepared the arrival of an egalitarian society with socialist and pacifist traits. Hanley, however, argues that Fénelon actually defended a more moderate and realistic model of political society than his Enlightenment exegetes have suggested. Like earlier commentators, Hanley attempts to prove his argument primarily through an analysis of Telemachus, the pedagogical novel Fénelon had composed for Louis, duc de Bourgogne, the "petit Dauphin" and grandson of Louis XIV, when Fénelon served as his tutor.Three strong chapters demonstrate Hanley's thesis concerning Fénelon's moderate politics and philosophy. Hanley argues that Fénelon's philosophy of education rests on a distinction between true and false glory. True glory resides in virtue and a humble recognition of divine glory, while false glory is the self-centered glorification of the human agent, which easily deteriorates into vanity. Rather than simply condemn self-interest, in his treatment of the education of the prince Fénelon argues that self-interest must be gradually transformed into a broader interest for the good of one's subjects and a deeper recognition of the glory of God. Earning the praise of his Enlightenment acolytes and later feminist commentators, Fénelon defends a solid education for women, but he clearly wants this education to prepare women for their domestic role as wives and mothers; his celebrated treatise and letters on the education of women are not an exercise in gender equality.The economic theory of Fénelon has often been interpreted as a type of utopian socialism. This is largely based on the central place taken by Bétique in the Telemachus. In this mythical land, the happy citizens practice a communist economics; private property is foreign to them. All their basic needs are provided for through communal cooperation. Luxury is also foreign to them; precious metals like gold and silver are used in practical construction as if they were pieces of iron. But Hanley argues that the prosocialist exegetes ignore the varied economies presented in the passages concerning Egypt, Crete, and Tyre. Bétique does not stand alone as an economic ideal. When Fénelon details how the economy of contemporary France should be reformed, it is far from simple socialism. The state has a strong initial role in the state's economic reform, but it works in tandem with private initiatives that will gradually become the stronger partner. "Fénelon differs from later socialists in insisting that the use of state power is not an end in itself, but necessary only to establish the conditions whereby a free economic system can emerge and flourish—at which point direct intervention of the state into economic affairs will diminish, and a free (though hardly unbridled) pursuit of self-interest will be encouraged" (81).Hanley also attacks the common argument that Fénelon is a pacifist who excoriates all recourse to war. Fénelon does indeed condemn war in the most graphic terms. As Archbishop of Cambrai in northern France, he had witnessed the brutal carnage and attendant famines that had decimated the population in repeated wars in this border area. But his nuanced critique of war rests on a distinction between false and true courage. False courage is found in the warrior who initiates war for the sake of his own false glory. True courage lies in those who defend the innocent out of a proper sense of duty; this courage contrasts with cowardice disguised as pacificism. Hanley argues that the confederation of nations that Fénelon envisions as a mechanism to mediate conflict and reduce the recourse to war is less a species of international government than... (shrink)

ABSTRACTExcluded from the university, women authors in early modern France acquired their philosophical culture from other venues. The tutorial, the salon, and the convent school are three of the e...

Certain passages in the Meditations indicate a silence of Descartes before the mystery of God. These passages underscore the inadequacy of reason to penetrate God’s attributes. Descartes underlines the incomprehensibility of God’s infinity and God’s purposes. He evokes an intuitive knowledge of God which transcends the conceptual. Relevant passages in the correspondence of Descartes indicate Descartes’s repeated concern with the limits of philosophical theology and support a deconstruction of the Medítations which privileges its recurrent theologia negativa. Such an interpretation of (...) the religious theory in public and private Cartesian texts contests the persistent “rationalist” interpretation of Descartes, which reduces the theology of the Meditations to a series of deductive proofs. (shrink)

The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...) address the question with protocols dictating that researchers place research results directly into study participants’ existing medical records, without participant consent. Such privileging of researcher judgment over participant choice may be motivated by a desire to discharge a duty that researchers perceive themselves as owing to participants. However, the underlying ethical, professional, legal, and regulatory duties that would compel or justify this action have not been fully explored. (shrink)