Data access and data sharing are vital to advance medicine. A growing number of public private partnerships are set up to facilitate data access and sharing, as private and public actors possess highly complementary health data sets and treatment development resources. However, the priorities and incentives of public and private organizations are frequently in conflict. This has complicated partnerships and sparked public concerns around ethical issues such as trust, justice or privacy—in turn raising an important problem in business and data (...) ethics: how can ethical theory inform the practice of public and private partners to mitigate misaligned incentives, and ensure that they can deliver societally beneficial innovation? In this paper, we report on the development of the Swiss Personalized Health Network’s ethical guidelines for health data sharing in public private partnerships. We describe the process of identifying ethical issues and engaging core stakeholders to incorporate their practical reality on these issues. Our report highlights core ethical issues in health data public private partnerships and provides strategies for how to overcome these in the Swiss health data context. By agreeing on and formalizing ethical principles and practices at the beginning of a partnership, partners and society can benefit from a relationship built around a mutual commitment to ethical principles. We present this summary in the hope that it will contribute to the global data sharing dialogue. (shrink)

BackgroundEthics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts.Main textIn this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map (...) these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science.ConclusionsWe believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large. (shrink)

Background There are intense discussions about the ethical and societal implications of biomedical engineering, but little data to suggest how scientists think about the ethics of their work. The aim of this study is to describe how scientists frame the ethics of their research, with a focus on the field of molecular systems engineering.Methods Semi-structured qualitative interviews were conducted during 2021–2022, as part of a larger study. This analysis includes a broad question about how participants view ethics as related to (...) their work, with follow up probes about the topics they consider most important. Interviews were transcribed, inductively coded by two researchers to consensus, and analyzed thematically.Results Twenty-four scientists participated in the study. Interviewees hold positions as professors, principal investigators, and senior staff researchers in universities or research institutes in the United States and Europe. Among those scientists who reported reflecting on ethical considerations in their work, many equated ethics with research ethics topics (e.g., safety, replicability), or with regulation and guidelines. Participants expressed the view that ethical issues are primarily relevant for clinical trials of bioengineered products, or for those working with animal or human subjects. Scientists described their research as “too early” or “not examining anything living” with regard to ethical reflection. Finally, many felt that ethics is seen as territory for experts and therefore beyond scientists’ competencies.Conclusions Molecular systems engineering scientists currently focus on regulatory aspects as the framework for their ethical analyses. They describe using a framework to define when life arises, as a means to determine when further ethical engagement is warranted. Further research is needed to investigate how scientists relate to the ethics of their scientific work, and build consensus around concepts of life, autonomous behavior, and physiological relevance of bioengineered systems. (shrink)

Background Despite the bourgeoning of digital tools for bioethics research, education, and engagement, little research has empirically investigated the impact of interactive visualizations as a way to translate ethical frameworks and guidelines. To date, most frameworks take the format of text-only documents that outline and offer ethical guidance on specific contexts. This study’s goal was to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience.Methods An experimental comparative study was conducted with (...) a pre-, mid-, and post-test design using the online survey platform Qualtrics. Participants were university based early-stage health researchers who were randomly assigned to either the control condition (text-only document) or the experimental condition (interactive-visual). The primary outcome variables were learning, (measured using a questionnaire), deliberation (using cases studies) and user experience (measured using the SED/UD Scale). Analysis was conducted using descriptive statistics and mixed-effects linear regression.Results Of the 80 participants, 44 (55%) used the text-only document and 36 (45%) used the interactive-visual. Results of the knowledge-test scores showed a statistically significant difference between participants’ post-test scores, indicating that the interactive-visual format better supported understanding, acquisition, and application of the framework’s knowledge. Findings from the case studies showed both formats supported ethical deliberation. Results further indicated the interactive-visual provided an overall better episodic and remembered user experience compared with the text-only document.Conclusions Our findings show that ethical frameworks formatted with interactive and visual qualities provide a more pleasing user experience and are effective formats for ethics learning and deliberation. These findings have implications for practitioners developing and deploying ethical frameworks and guidelines (e.g., in educational or employee-onboarding settings), in that the knowledge generated can lead to more effective dissemination practices of normative guidelines and health data ethics concepts. (shrink)

De uma perspectiva comportamentalista radical, o eu é um repertório verbal complexo, que, como tal, tem uma gênese social. O reconhecimento da origem social do “eu” abre caminho para uma análise política, incluindo uma discussão do pa- pel das relações de poder na constituição do eu. Entretanto, uma concepção radicalmente social do “eu”, como a proposta pelo comportamentalismo, suscita um problema político: se o eu é integralmente produto do ambiente social, de onde viria uma eventual “vontade” de romper com esse (...) sistema? Parece que para reconhecer a possibilidade de ação política transformadora seria preciso preservar uma noção descontextualizada de “eu”. Considerando essa dificuldade, o objetivo deste artigo é propor uma interpretação política da constituição do “eu” no âmbito do comportamentalismo radical, mantendo no horizonte a possibilidade de uma ação política transformadora. Para tanto, destacamos como “eus” oprimidos são tornados submissos, mas também como de certas contingências podem emergir “eus” subversivos, que se opõem a um sistema social opressivo. Esse “eu” subversivo é caracterizado por um repertório de autoconhecimento mais amplo, que inclui a discriminação do papel das relações de poder e do controle promovido por instituições. Concluímos, com isso, que um “eu” socialmente constituído pode ser politicamente ativo. (shrink)

This study focuses on the spatialization and institutionalization of social networks of Russian women who migrated to Turkey via marriage in the last 30 years. Specifically, it investigates how and why their social networks have been changing at the local and transnational levels. We conducted in-depth interviews with 56 women between 2014−2021. Our extensive analysis indicates that despite their newly established status via marriages, the Russian women have weak ties with the locals regardless of the migration period, preferring mostly to (...) engage with other Russian women in Turkey. Even if the different migrant associations established by Russian migrants in Turkey do not actually aim this, they create an effect that increases the social distance with the host society and serves to strengthen the connection between the migrants. Also, unlike pioneer migrants, newer marriage migrants have established strong transnational ties with others living overseas, regardless of their gender or ethnic identity. Further, this study reveals that the migrant women's subjectivity, their spouses’ benefit-oriented negotiation styles, and the state's diaspora policy all shape the women's social networks at different levels. (shrink)

This chapter introduces and defends a pragmatist model of aesthetic disagreement that avoids many of the philosophical puzzles generated by the traditional, semantic, approach. Mainstream philosophical inquiry into aesthetic disagreement begins with a rather innocuous assumption: to understand what’s going on we must first explain what disputants are saying, which involves identifying the meaning of the relevant expressions or determining how aesthetic claims could be true. However, this task brings with it a new host of semantic and epistemic puzzles and (...) fails to vindicate the central role aesthetic disagreements occupy in our aesthetic lives more generally. Further, it isn’t clear how settling the meaning of aesthetic expressions bears on everyday aesthetic disagreements. Paying attention to what we do in an aesthetic disagreement will give us a better chance at identifying what matters for determining what we say. (shrink)

E. Jayne Whitea, Catherine Matsuob and Fiona WestbrookcaUniversity of Canterbury; bFukuoka University; cAuckland University of Technology (AUT)This collective writing piece takes its points of depa...

The cosmological constant problem arises at the intersection between general relativity and quantum field theory, and is regarded as a fundamental problem in modern physics. In this paper, we describe the historical and conceptual origin of the cosmological constant problem which is intimately connected to the vacuum concept in quantum field theory. We critically discuss how the problem rests on the notion of physically real vacuum energy, and which relations between general relativity and quantum field theory are assumed in order (...) to make the problem well-defined. (shrink)

Selected articles of Ēṭukūru Balarāmamūrti on Marxist philosophy; includes contributed on his life and work.

In the _World Library of Educationalists_, international experts themselves compile career-long collections of what they judge to be their finest pieces – extracts from books, key articles, salient research findings, major theoretical and practical contributions – so the world can read them in a single manageable volume, allowing readers to follow the themes of their work and see how it contributes to the development of the field. Mary James has researched and written on a range of educational subjects which encompass (...) curriculum, pedagogy and assessment in schools, and implications for teachers´ professional development, school leadership and policy frameworks. She has written many books and journals on assessment, particularly assessment for learning and is an expert on teacher learning, curriculum, leadership for learning and educational policy. Starting with a specially written introduction in which Mary gives an overview of her career and contextualises her selection, the chapters are divided into three parts: Educational Assessment and Learning Educational Evaluation and Curriculum Development Educational Research and the Improvement of Practice Through this book, readers can follow the different strands that Mary James has researched and written about over the last three decades, and clearly see her important contribution to the field of education. (shrink)

In response to rapidly rising health care costs in the United States, federal and state governments and private industry are instituting numerous and diverse cost-containment plans. As devices for coping with a scarcity of resources, such plans present serious challenges to physicians' traditional single-minded devotion to patient welfare. Those which contain costs by directly limiting medical options or by controlling physicians' daily clinical decisions can threaten the quality of medical care by allowing economic authorities to make essentially medical judgments. In (...) contrast, other plans coax compliance by arranging incentives, e.g., offering financial rewards for successful cost containment. While they allow for clinical freedom, these plans create conflicts between physicians' fiduciary obligations to their patients and the competing interests of the payers. Such conflicts arise as physicians try to work within governmental or corporate cost containment policies, and also as they attempt to streamline clinical efficiency. Throughout, issues of justice emerge as physicians seek to reconcile their own patients' claims upon limited common resources with others' equally legitimate claims. (shrink)

Robert E. Butts (1928-1997) was a philosopher and historian of science whose central concerns were the distinction between the rational and the irrational. He viewed scientific rationality as our major defence against the various conditions that encourage witch hunts and similar outbursts of irrationality, with all their attendant pain and terror. Butts saw himself as a pragmatic realist, combining what he took to be the best aspects of logical empiricism with a historically informed pragmatism, deeply appreciative of the methods of (...) science, trying to describe a kind of rationality essential in the struggle to preserve human values. This volume gathers previously unpublished essays and lectures with some previously published, thematically related essays. It includes essays and lectures on philosophical aspects of the European witch hunt, on scientific rationality and methodology, and on the relationships between science and philosophy exhibited in the writings of such historically significant figures as Leibniz, D'Alembert, Hume, Kant, Carnap and Kuhn. (shrink)

This article analyses the role of ideas about class in the conceptualization of citizenship in twentieth-century Britain. It argues that the way in which citizenship was conceptualized involved a process of ideological engagement, by which a specific interpretation of the concept of class was asserted, and other possible interpretations closed off, as a result of particular preferences and priorities. The analysis is pursued through a comparative case study of the way in which two particular thinkers -- Henry Jones and T.H. (...) Marshall -- developed their ideas about citizenship within two different historical contexts in Britain: the late nineteenth century through to the 1910s, and the 1940s through to the 1970s. Jones and Marshall defined their conceptions of citizenship in opposition to notions of class as a basis for social organization, and both saw citizenship as a means by which individuals could trans- cend the boundaries of class. The specific way in which each interpreted the concept of class, however, led to different conclusions as to the process by which this would be achieved, which, in turn, determined the principles upon which they based their conceptions of citizenship. (shrink)