As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what has been called an ethics gap. -/- (...) Working to close this gap, practitioners and scholars have considered new mechanisms of ethical oversight for biomedical citizen science. To date, however, participants’ attitudes about ethics and oversight preferences have not been systematically examined. This information is useful to efforts to develop ethical oversight mechanisms because it provides a basis for evaluating the likely effectiveness of specific features of such mechanisms and their acceptability from the perspective of biomedical citizen scientists. -/- Here, we report data from qualitative interviews with 35 stakeholders in bottom-up biomedical citizen science about their general ethics attitudes and preferences regarding ethical oversight. Interviewees described ten ethical priorities and endorsed oversight mechanisms that are voluntary, community-driven, and offer guidance. Conversely, interviewees rejected mechanisms that are mandatory, hierarchical, and inflexible. Applying these findings, we conclude that expert consultation and community review models appear to align well with ethical priorities and oversight preferences of many biomedical citizen scientists, although local conditions should guide the development and use of mechanisms in specific communities. (shrink)

Background As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. The question of how to self-identify has important ethical, political, and practical implications to the extent that shared language reflects a common ethos and goals and shapes behavior. Biomedical citizen science in particular has come to be associated with terms that reflect its unique activities, concerns, and priorities. To date, however, there is scant evidence regarding (...) how biomedical citizen scientists prefer to describe themselves, their work, and the values that they attach to these terms.Methods In 2018, we conducted semi-structured interviews with 35 biomedical citizen scientists in connection with a larger study to understand ownership preferences. Interview data were analyzed to identify the terms that interviewees used and avoided to describe themselves and their work, as well as the reasons for their preferences.Results Biomedical citizen scientists self-identified using three main terms: citizen scientist, biohacker, and community scientist. However, there was a lack of consensus among interviewees on the appropriateness of each term, two of which prompted conflicting responses. Self-identification preferences were based on personal judgments about whether specific terms convey respect, are provocative, or are broad and inclusive, as well as the desirability of each of these messages.Conclusions The lack of consensus about self-identification preferences in biomedical citizen science reflects the diversity of experiences and goals of individuals participating in this field, as well as different perceptions of the values signaled by and implications of using each term. Heterogeneity of preferences also may signal the parallel development of multiple communities in biomedical citizen science. (shrink)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger—and also more likely to conflict with those of institution-based researchers and other stakeholders—as (...) participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. Methods We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants’ access to and control over research outputs. Results This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants’ access to research outputs, including datasets and published findings, none supported participants’ control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. Conclusions There are opportunities for citizen science initiatives to incorporate more features that support participants’ access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities. (shrink)

The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders’ conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists’ (...) ownership and related credit interests in research outputs: shared governance via commons models; fractional ownership of benefits; full and creative attribution; and offensive and defensive patenting. Interviewees also agreed that the model selected by any project should at least maximize access to research outputs and, as appropriate and to the extent possible, broadly distribute rights of control and entitlements to research benefits. (shrink)

Saul Kripke, among others, reads Wittgenstein’s private-language argument as an inference from the idea of rule following: The concept of a private language is inconsistent, because using language entails following rules, and following rules entails being a member of a community. Kripke expresses the key exegetical claim underlying that reading as follows.

Language Games 2 This chapter provides some background necessary for subsequent discussions by sketching in the idea of a language game, thereby giving a ...

1. The early philosophy--language as picture -- 2. Logic and ontology -- 3. "My world and its value" -- 4. The later philosophy--views and reviews -- 5. Method and essense -- 6. Meaning -- 7. Criteria -- 8. Knowing, naming, certainty, and idealism -- 9. The private language argument -- 10. Logical necessity and rules -- 11. Philosophy of mathematics -- 12. Persons -- 13. Psychology and conceptual relativity -- 14. Aesthetics, ethics, and religion -- 15. Elective affinities.

As intergenerational interactions increase due to an ageing population, the study of emotion-related responses to the elderly is increasingly relevant. Previous research found mixed results regarding affective mimicry – a measure related to liking and affiliation. In the current study, we investigated emotional mimicry to younger and older actors following an encounter with a younger and older player in a Cyberball game. In a complete exclusion condition, in which both younger and older players excluded the participant, we expected emotional mimicry (...) to be stronger for younger vs. older actors. In a partial inclusion condition, in which the younger player excluded while the older player included the participant, we predicted that the difference in player behaviour would lead to a difference in liking. This increased liking of the older interaction partner should reduce the difference in emotional mimicry towards the two different age groups. Results revealed more mimicry for older actors following partial inclusion especially for negative emotions, suggesting inclusive behaviour by an older person in an interaction as a possible means to increase mimicry and affiliation to the elderly. (shrink)

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and (...) interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

This book is a philosophical examination of the main stages in our journey from hominid to human. It deals with the nature and origin of language, the self, self-consciousness, and the religious ideal of a return to Eden. It approaches these topics through a philosophical anthropology derived from the later writings of Wittgenstein. The result is an account of our place in nature consistent with both a hard-headed empiricism and a this-worldy but religiously significant mysticism.

Based on an extensive review of the literature and field surveys, the paper proposes a conceptualization and operationalization of corporate citizenship meaningful in two countries: the United States and France. A survey of 210 American and 120 French managers provides support for the proposed definition of corporate citizenship as a construct including the four correlated factors of economic, legal, ethical, and discretionary citizenship. The managerial implications of the research and directions for future research are discussed.

1. The early philosophy--language as picture -- 2. Logic and ontology -- 3. "My world and its value" -- 4. The later philosophy--views and reviews -- 5. Method and essense -- 6. Meaning -- 7. Criteria -- 8. Knowing, naming, certainty, and idealism -- 9. The private language argument -- 10. Logical necessity and rules -- 11. Philosophy of mathematics -- 12. Persons -- 13. Psychology and conceptual relativity -- 14. Aesthetics, ethics, and religion -- 15. Elective affinities.

AbstractCritics charge that agriculture has reached an unsustainable level of consolidation and expropriation, as exemplified by the supply-chain breakdown of the COVID-19 pandemic. Simultaneously, advocates suggest the current system serves consumers well by keeping prices low and access to choices high. At the center of this debate rests a disagreement over how to compute market power to identify monopolies and oligopolies. We propose a method to study power across different sectors by using Social Network Analysis to analyze key players, the (...) presence of core-periphery structures, and agricultural consolidation. We test our market network approach to power through an analysis of the top ten pork powerhouses. We find that Big Finance is closely tied to Big Ag, and that key players limit the capacity for more peripheral actors, like growers, equipment producers, and regional banks, to engage in the network. We identify system level risk of collapse and suggest pathways for reform. (shrink)

Alfred North Whitehead has never gone out of print, but for a time he was decidedly out of fashion in the English-speaking world. In a splendid work that serves as both introduction and erudite commentary, Isabelle Stengersâe"one of todayâe(tm)s leading philosophers of scienceâe"goes straight to the beating heart of Whiteheadâe(tm)s thought. The product of thirty yearsâe(tm) engagement with the mathematician-philosopherâe(tm)s entire canon, this volume establishes Whitehead as a daring thinker on par with Gilles Deleuze, Felix Guattari, and Michel Foucault. Reading (...) the texts in broadly chronological order while highlighting major works, Stengers deftly unpacks Whiteheadâe(tm)s often complicated language, explaining the seismic shifts in his thinking and showing how he called into question all that philosophers had considered settled after Descartes and Kant. She demonstrates that the implications of Whiteheadâe(tm)s philosophical theories and specialized knowledge of the various sciences come yoked with his innovative, revisionist take on God. Whiteheadâe(tm)s God exists within a specific epistemological realm created by a radically complex and often highly mathematical language. âeoeTo think with Whitehead today,âe Stengers writes, âeoemeans to sign on in advance to an adventure that will leave none of the terms we normally use as they were.âe. (shrink)

In the wake of the 2008 global financial crisis, an important conceptual battleground for democratic theorists ought to be, it would seem, the capitalist firm. We are now painfully aware that the typical model of government in so-called investor-owned companies remains profoundly oligarchic, hierarchical, and unequal. Renewing with the literature of the 1970s and 1980s on workplace democracy, a few political theorists have started to advocate democratic reforms of the workplace by relying on an analogy between firm and state. To (...) the extent that a firm is an organization comparable to the state, it too ought to be ruled along democratic lines. Our paper tests the robustness of the analogy between firm and state by considering six major objections to it: the objection from a difference in ends, the objection from shareholders’ property rights, the objection from worker’s consent, the objection from workers’ exit opportunities, the objection from workers’ expertise, and the objection from the fragility of firms. We find all of these objections wanting. While the paper does not ambition to settle the issue of workplace democracy at once, our goal is to pave the way for a more in-depth study of the ways in which firms and states can be compared and the possible implications this may have for our understanding of the nature of managerial authority and the governance of firms. (shrink)

An innovative, multifaceted approach to scientific experiments as designed by and shaped through interaction with the modeling process The role of scientific modeling in mediation between theories and phenomena is a critical topic within the philosophy of science, touching on issues from climate modeling to synthetic models in biology, high energy particle physics, and cognitive sciences. Offering a radically new conception of the role of data in the scientific modeling process as well as a new awareness of the problematic aspects (...) of data, this cutting-edge volume offers a multifaceted view on experiments as designed and shaped in interaction with the modeling process. Contributors address such issues as the construction of models in conjunction with scientific experimentation; the status of measurement and the function of experiment in the identification of relevant parameters; how the phenomena under study are reconceived when accounted for by a model; and the interplay between experimenting, modeling, and simulation when results do not mesh. Highlighting the mediating role of models and the model-dependence of data measurement, this volume proposes a normative and conceptual innovation in scientific modeling--that the phenomena to be investigated and modeled must not be precisely identified at the start but specified during the course of the interactions arising between experimental and modeling activities. Contributors: Nancy D. Cartwright, U of California, San Diego; Anthony Chemero, U of Cincinnati; Ronald N. Giere, U of Minnesota; Jenann Ismael, U of Arizona; Tarja Knuuttila, U of South Carolina; Andrea Loettgers, U of Bern, Switzerland; Deborah Mayo, Virginia Tech; Joseph Rouse, Wesleyan U; Paul Teller, U of California, Davis; Michael Weisberg, U of Pennsylvania; Eric Winsberg, U of South Florida. (shrink)

Concerned with the interplay between science, society, and power, Isabelle Stengers offers a unique perspective on the power of scientific theories to modify society, and vice versa. 9 diagrams.

"Isabelle Stengers presents us with a new way of understanding a remarkably diverse range of sciences and their relation to a material and living world. Playing with a position both inside the practices that constitute and transform science and outside the sciences as their mode of conceptualization, Stengers explores the limits, constraints, and inventions that fuse modern science and contemporary society." Elizabeth Grosz --.

This paper demonstrates how argumentation schemes can be used in decision support systems that help clinicians in making treatment decisions. The work builds on the use of computational argumentation, a rigorous approach to reasoning with complex data that places strong emphasis on being able to justify and explain the decisions that are recommended. The main contribution of the paper is to present a novel set of specialised argumentation schemes that can be used in the context of a clinical decision support (...) system to assist in reasoning about what treatments to offer. These schemes provide a mechanism for capturing clinical reasoning in such a way that it can be handled by the formal reasoning mechanisms of formal argumentation. The paper describes how the integration between argumentation schemes and formal argumentation may be carried out, sketches how this is achieved by an implementation that we have created and illustrates the overall process on a small set of case studies. (shrink)

I can’t help but like a book that calls Wittgenstein the greatest philosopher since Kant and then proceeds to show how On Certainty, a manifestly brilliant but understudied book, sheds light on matters under current debate. It is pleasant to see a highly skilled contemporary put texts from the later philosophy under close scrutiny and mine them for insight, and that outside the bounds of familiar Wittgenstein scholarship.

The God of the Machine presents an original theory of history and a bold defense of individualism as the source of moral and political progress.

This study brings together the analysis of a magazine for children published in a mass-circulation newspaper in a poor industrialized country. Based on a comprehensive survey of articles popularizing science, technology and health topics printed in Notícias Miudinho between 1924 and 1933, this paper intends to show how this publication tuned in with the on-going Portuguese political and educational agenda, while highlighting the idiosyncrasies of the networks involved in the publication of the magazine. In addition, and based on the analysis (...) of the magazine’s mail section, this paper questions historiographic claims about the reduced impact of the Republican education programme. At the same time, this essay intends to contribute to the discussion on the historicity of ‘popular science’ while putting in evidence the importance of understanding the particularities of the actors and networks involved locally to grasp the full extent to which science culturally permeates, mirrors and models society worldwide. (shrink)

This book offers a comprehensive presentation of the Pratyabhij philosophy (elaborated in the 10th and 11th centuries by Utpaladeva and Abhinavagupta) by showing how its main concepts arose from the confrontation of aiva religious dogmas ...