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  1. Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.
    In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...)
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  • Bioinformatics and the Politics of Innovation in the Life Sciences: Science and the State in the United Kingdom, China, and India.Charlotte Salter, Saheli Datta, Yinhua Zhou & Brian Salter - 2016 - Science, Technology, and Human Values 41 (5):793-826.
    The governments of China, India, and the United Kingdom are unanimous in their belief that bioinformatics should supply the link between basic life sciences research and its translation into health benefits for the population and the economy. Yet at the same time, as ambitious states vying for position in the future global bioeconomy they differ considerably in the strategies adopted in pursuit of this goal. At the heart of these differences lies the interaction between epistemic change within the scientific community (...)
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  • How Does One “Open” Science? Questions of Value in Biological Research.Sabina Leonelli & Nadine Levin - 2017 - Science, Technology, and Human Values 42 (2):280-305.
    Open Science policies encourage researchers to disclose a wide range of outputs from their work, thus codifying openness as a specific set of research practices and guidelines that can be interpreted and applied consistently across disciplines and geographical settings. In this paper, we argue that this “one-size-fits-all” view of openness sidesteps key questions about the forms, implications, and goals of openness for research practice. We propose instead to interpret openness as a dynamic and highly situated mode of valuing the research (...)
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  • Models, Parameterization, and Software: Epistemic Opacity in Computational Chemistry.Frédéric Wieber & Alexandre Hocquet - 2020 - Perspectives on Science 28 (5):610-629.
    . Computational chemistry grew in a new era of “desktop modeling,” which coincided with a growing demand for modeling software, especially from the pharmaceutical industry. Parameterization of models in computational chemistry is an arduous enterprise, and we argue that this activity leads, in this specific context, to tensions among scientists regarding the epistemic opacity transparency of parameterized methods and the software implementing them. We relate one flame war from the Computational Chemistry mailing List in order to assess in detail the (...)
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  • The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.Kathryn Maxson Jones, Rachel A. Ankeny & Robert Cook-Deegan - 2018 - Journal of the History of Biology 51 (4):693-805.
    The Bermuda Principles for DNA sequence data sharing are an enduring legacy of the Human Genome Project. They were adopted by the HGP at a strategy meeting in Bermuda in February of 1996 and implemented in formal policies by early 1998, mandating daily release of HGP-funded DNA sequences into the public domain. The idea of daily sharing, we argue, emanated directly from strategies for large, goal-directed molecular biology projects first tested within the “community” of C. elegans researchers, and were introduced (...)
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  • Classificatory Theory in Data-intensive Science: The Case of Open Biomedical Ontologies.Sabina Leonelli - 2012 - International Studies in the Philosophy of Science 26 (1):47 - 65.
    Knowledge-making practices in biology are being strongly affected by the availability of data on an unprecedented scale, the insistence on systemic approaches and growing reliance on bioinformatics and digital infrastructures. What role does theory play within data-intensive science, and what does that tell us about scientific theories in general? To answer these questions, I focus on Open Biomedical Ontologies, digital classification tools that have become crucial to sharing results across research contexts in the biological and biomedical sciences, and argue that (...)
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  • “What Is the FDA Going to Think?”: Negotiating Values through Reflective and Strategic Category Work in Microbiome Science.Pamela L. Sankar, Mildred K. Cho, Angie M. Boyce & Katherine W. Darling - 2015 - Science, Technology, and Human Values 40 (1):71-95.
    The US National Institute of Health’s Human Microbiome Project aims to use genomic techniques to understand the microbial communities that live on the human body. The emergent field of microbiome science brought together diverse disciplinary perspectives and technologies, thus facilitating the negotiation of differing values. Here, we describe how values are conceptualized and negotiated within microbiome research. Analyzing discussions from a series of interdisciplinary workshops conducted with microbiome researchers, we argue that negotiations of epistemic, social, and institutional values were inextricable (...)
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  • From the genetic to the computer program: the historicity of ‘data’ and ‘computation’ in the investigations on the nematode worm C. elegans.Miguel García-Sancho - 2012 - Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 43 (1):16-28.
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  • The cancer multiple: Producing and translating genomic big data into oncology care.Peter A. Chow-White & Tiên-Dung Hà - 2021 - Big Data and Society 8 (1).
    This article provides an ethnographic account of how Big Data biology is produced, interpreted, debated, and translated in a Big Data-driven cancer clinical trial, entitled “Personalized OncoGenomics,” in Vancouver, Canada. We delve into epistemological differences between clinical judgment, pathological assessment, and bioinformatic analysis of cancer. To unpack these epistemological differences, we analyze a set of gazes required to produce Big Data biology in cancer care: clinical gaze, molecular gaze, and informational gaze. We are concerned with the interactions of these bodily (...)
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  • Globalizing Genomics: The Origins of the International Nucleotide Sequence Database Collaboration.Hallam Stevens - 2017 - Journal of the History of Biology 51 (4):657-691.
    Genomics is increasingly considered a global enterprise – the fact that biological information can flow rapidly around the planet is taken to be important to what genomics is and what it can achieve. However, the large-scale international circulation of nucleotide sequence information did not begin with the Human Genome Project. Efforts to formalize and institutionalize the circulation of sequence information emerged concurrently with the development of centralized facilities for collecting that information. That is, the very first databases build for collecting (...)
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  • Big Data-Revolution oder Datenhybris?: Überlegungen zum Datenpositivismus der Molekularbiologie.Gabriele Gramelsberger - 2017 - NTM Zeitschrift für Geschichte der Wissenschaften, Technik und Medizin 25 (4):459-483.
    ZusammenfassungGenomdaten, Kernstück der 2008 ausgerufenen Big Data-Revolution der Biologie, werden voll automatisiert sequenziert und analysiert. Der Wechsel von der manuellen Laborpraktik der Elektrophorese-Sequenzierung zu DNA-Sequenziermaschinen und softwarebasierten Analyseprogrammen vollzog sich zwischen 1982 und 1992. Erst dieser Wechsel ermöglichte die Flut an Daten, die mit der zweiten und dritten Generation der DNA-Sequenzierer erheblich zunimmt. Doch mit diesem Wechsel verändern sich auch die Validierungsstrategien der Genomdaten. Der Beitrag untersucht beides – die Automatisierung und die damit verbundene Validierungskultur – um ein Bild der (...)
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