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)

In this consensus report by a diverse group of academics who conduct and/or are concerned about social and behavioral genomics (SBG) research, the authors recount the often‐ugly history of scientific attempts to understand the genetic contributions to human behaviors and social outcomes. They then describe what the current science—including genomewide association studies and polygenic indexes—can and cannot tell us, as well as its risks and potential benefits. They conclude with a discussion of responsible behavior in the context of SBG research. (...) SBG research that compares individuals within a group according to a “sensitive” phenotype requires extra attention to responsible conduct and to responsible communication about the research and its findings. SBG research (1) on sensitive phenotypes that (2) compares two or more groups defined by (a) race, (b) ethnicity, or (c) genetic ancestry (where genetic ancestry could easily be misunderstood as race or ethnicity) requires a compelling justification to be conducted, funded, or published. All authors agree that this justification at least requires a convincing argument that a study's design could yield scientifically valid results; some authors would additionally require the study to have a socially favorable risk‐benefit profile. (shrink)

This commentary builds on Haico te Kulve and Arie Rip’s ( 2011 ) notion of “engagement agents,” individuals that must be able to move between multiple dimensions, or “levels” of research, innovation, and policy processes. The commentary compares and contrasts the role of the engagement agent within the Constructive Technology Assessment and integration approaches, and suggests that on-site integration research represents one way to transform both social and natural scientists into competent and informed “engagement agents,” a new generation of researchers (...) that possess the knowledge and capacities to forge “novel linkages” between the oftentimes disparate terrains of science, politics, and policy. (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)

My aim here is (1) to argue that the usual argument for thinking dysfunction has no place in a dispositionalist approach to functions is deeply flawed and (2) to develop a positive account of the explanatory role dysfunction attributions play in dispositionalist-style functional analysis. I will also argue that while my account undermines one common motivation for preferring an etiological over a dispositionalist approach, perhaps more interestingly, it also blurs the boundary between the two and opens a path to unifying (...) them. (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)

Ecopolitics is a study of environmental awareness--or non-awareness--in contemporary French theory. Arguing that it is now impossible not to think in an ecological way, Verena Andermatt Conley traces the roots of today's concern for the environment back to the intellectual climate of the late '50s and '60s. Major thinkers of 1968, the author argues, changed the way we think the world; this owes much to an ecological awareness that remains at the heart of issues concerning cultural theory in general. The (...) book points to critiques of ecology in the work of Luc Ferry and Jean Baudrillard before turning to more complicated ecological awareness primarily in French thought. The author considers key texts by influential figures such as Michael Serres, Paul Virilio, Gilles Deleuze and Felix Guattari, Michel de Certeau, Helene Cixous and Luce Irigaray. (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)

Research on animal behavior is typically organized according to a combination of two influential frameworks: Ernst Mayr’s distinction between proximate and ultimate causes, and Niko Tinbergen’s “four questions”. My aim is to debunk two common interpretive misconceptions about Mayr’s proximate–ultimate distinction and its relationship to Tinbergen’s four questions, and to offer a new interpretation that avoids both. The first misconception is that the proximate–ultimate distinction maps cleanly onto Tinbergen’s four questions, marking a boundary between Tinbergen’s evolutionary and survival value questions (...) versus developmental and mechanistic questions. The second is that Mayr’s proximate–ultimate distinction is meant to rule out the relevance of proximate causes to evolutionary explanations. I argue that neither is plausible given the text and Mayr’s philosophical aims, namely, to argue that evolutionary biology cannot be reduced to either the physical sciences or to other areas of biology. Through a reconstruction of Mayr’s anti-reductionist argument, I develop an interpretation according to which the proximate–ultimate distinction marks two ways that teleological reasoning can be naturalistically grounded in biology, corresponding to Mayr’s distinction between teleonomic and adapted systems. Mayr distinguishes reduction, which the proximate–ultimate distinction is meant to block, from analysis, through which he allows that proximate causes, causes that are neither proximate nor ultimate, and chance can all contribute to evolutionary explanations. I conclude by suggesting some ways in which the interpretation defended here reframes our understanding of Mayr’s disagreements with some evolutionary-developmental biologists. (shrink)

Research on animal behavior is typically organized according to a combination of two influential frameworks: Ernst Mayr’s distinction between proximate and ultimate causes, and Niko Tinbergen’s “four questions”. My aim is to debunk two common interpretive misconceptions about Mayr’s proximate–ultimate distinction and its relationship to Tinbergen’s four questions, and to offer a new interpretation that avoids both. The first misconception is that the proximate–ultimate distinction maps cleanly onto Tinbergen’s four questions, marking a boundary between Tinbergen’s evolutionary and survival value questions (...) versus developmental and mechanistic questions. The second is that Mayr’s proximate–ultimate distinction is meant to rule out the relevance of proximate causes to evolutionary explanations. I argue that neither is plausible given the text and Mayr’s philosophical aims, namely, to argue that evolutionary biology cannot be reduced to either the physical sciences or to other areas of biology. Through a reconstruction of Mayr’s anti-reductionist argument, I develop an interpretation according to which the proximate–ultimate distinction marks two ways that teleological reasoning can be naturalistically grounded in biology, corresponding to Mayr’s distinction between teleonomic and adapted systems. Mayr distinguishes reduction, which the proximate–ultimate distinction is meant to block, from analysis, through which he allows that proximate causes, causes that are neither proximate nor ultimate, and chance can all contribute to evolutionary explanations. I conclude by suggesting some ways in which the interpretation defended here reframes our understanding of Mayr’s disagreements with some evolutionary-developmental biologists. (shrink)

Adverse developmental exposures and pathologies of the social environment make vastly greater contributions to the leading health burdens in society than currently known genotypic information. Yet, while patients now commonly bring information on single alleles to the attention of their healthcare team, the former conditions are only rarely considered with respect to future health outcomes. This manuscript aims to integrate social environmental influences in genetic predictive models of disease risk. Healthcare providers must be educated to better understand genetic risks for (...) complex diseases and the specific health consequences of societal adversities, to facilitate patient education, disease prevention, and the optimal care in order to achieve positive health outcomes for those with early trauma or other social disadvantage. (shrink)

This paper presents an experimental approach for engaging undergraduate STEM students in anticipatory ethical reasoning, or ethical reasoning applied to the analysis of potential mid- to long-term implications and outcomes of technological innovation. The authors implemented two variations of an approach that integrates three key components—scenario analysis, design fiction, and ethical frameworks—into five sections of an introductory course on the social contexts of science and technology that is required of STEM majors. The authors dub this approach Creative Anticipatory Ethical Reasoning, (...) or CAER. Scenario analysis is a strategy emerging from business consulting for grounded analysis of plausible future trajectories to inform planning. Design fiction is a creative hands-on activity that blends science fiction and design prototyping to facilitate critical thinking with respect to the societal dimensions of a plausible future technology. The authors present the following findings: in each of the variations, students demonstrated significant engagement with CAER and a substantive shift in their conception of what constitutes responsible innovation and ethical conduct in science and technology. Specifically, their integration of ethical reasoning with stakeholder perspectives and scenario analysis reframed technologies, from unproblematic solutions for societal problems to socially-embedded forms of life that might diverge from designers’ intentions. This suggests that CAER could be a useful pedagogical intervention for expanding students’ ethical engagement to consider the potential unintended consequences of technological innovation. (shrink)

A sample of 44 psychologists who practice in the Caribbean completed a web-based survey containing 73 behavioral items related to ethical issues in professional practice. The aim of this exploratory study was to learn about perceptions regarding ethical behaviors that create ethical dilemmas and the level of agreement to their responses and to identify how demographic variables influenced their perceptions of ethical behaviors. Findings suggest that there was approximately an equal level of agreement on behaviors such as being an advocate (...) for your client and being sexually involved with a current client rated as ethical and unethical, respectively. Several demographic variables and ethical behaviors such as level of degree and confidentiality issues were statistically significant. Finally, psychologists prefer the presence of a professional psychological association with an ethics committee. (shrink)

Debates about the concept of disease have traditionally been framed as a competition between two conflicting approaches: naturalism, on the one hand, and normativism or social constructivism, on the other. In this article, we lay the groundwork for a naturalistic form of social constructivism by dissociating the presumed link between value-free conceptions of disease and a broadly naturalistic approach; offering a naturalistic argument for a form of social constructivism; and suggesting avenues that strike us as especially promising for filling in (...) the details of an alternative approach and addressing the most obvious objections. (shrink)

We show that any symmetric, Baire measurable function from the complement of $\ezero$ to a finite set is constant on an $\ezero$-nonsmooth square. A simultaneous generalization of Galvin's theorem that Baire measurable colorings admit perfect homogeneous sets and the Kanovei-Zapletal theorem canonizing Borel equivalence relations on $E_0$-nonsmooth sets, this result is proved by relating $\ezero$-nonsmooth sets to embeddings of the complete binary tree into itself and appealing to a version of Hindman's theorem on the complete binary tree. We also establish (...) several canonization theorems which follow from the main result. (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)

This volume examines some of the most contentious social justice issues present in the corpus of Augustine's writings. Whether one is concerned with human trafficking and the contemporary slave trade, the global economy, or endless wars, these essays further the conversation on social justice as informed by the writings of Augustine of Hippo.

“Hypernormal science” has minimal potential for contestation on matters of principle and practice so that information exchange can be unproblematic. Sciences comprise hypernormal domains and more contestable “normal” domains where knowledge diffusion, like acquiring linguistic fluency, depends on face-to-face interaction. Hypernormal domains belonging to molecular biology are contrasted with normal domains in gravitational wave detection physics. Sciences as a whole should not be confused with their typical domains. The analysis has immediate implications for proposed transitions out of the Covid-19 lockdown, (...) proposed solutions to the replication crisis, and, perhaps, our understanding of the early development of social studies of science. (shrink)

La femme s'entête répond à La Femme sans tête (dite aussi Femme 100 têtes) de Max Ernst : loin de répéter les mêmes palinodies sur la créativité féminine (bridée, ou exaltée par le surréalisme), elle s'entête, passionnée tout en refusant la polémique à comprendre et à décrire. Voici donc, abondamment illustrés, un riche outil de travail et une série de portraits, souvent totalement inédits, d'artistes et d'écrivains.

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.