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  1. Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion.Ilaria Galasso - 2023 - American Journal of Bioethics 24 (3):71-85.
    This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current “diversity and inclusion” efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from (...)
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  • Data as asset? The measurement, governance, and valuation of digital personal data by Big Tech.Callum Ward, D. T. Cochrane & Kean Birch - 2021 - Big Data and Society 8 (1).
    Digital personal data is increasingly framed as the basis of contemporary economies, representing an important new asset class. Control over these data assets seems to explain the emergence and dominance of so-called “Big Tech” firms, consisting of Apple, Microsoft, Amazon, Google/alphabet, and Facebook. These US-based firms are some of the largest in the world by market capitalization, a position that they retain despite growing policy and public condemnation—or “techlash”—of their market power based on their monopolistic control of personal data. We (...)
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  • Renting Valuable Assets: Knowledge and Value Production in Academic Science.Clémence Pinel - 2021 - Science, Technology, and Human Values 46 (2):275-297.
    This paper explores what it takes for research laboratories to produce valuable knowledge in academic institutions marked by the coexistence of multiple evaluative frameworks. Drawing upon ethnographic fieldwork carried out in two UK-based epigenetics research laboratories, I examine the set of practices through which research groups intertwine knowledge production with the making of scientific, health, and wealth value. This includes building and maintaining a portfolio of valuable resources, such as expertise, scientific credibility, or data, and turning these resources into assets (...)
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  • Global Fertility Chains: An Integrative Political Economy Approach to Understanding the Reproductive Bioeconomy.Michal Nahman, Vincenzo Pavone & Sigrid Vertommen - 2022 - Science, Technology, and Human Values 47 (1):112-145.
    Over the last two decades, social scientists across disciplines have been researching how value is extracted and governed in the reproductive bioeconomy, which broadly refers to the various ways reproductive tissues, bodies, services, customers, workers, and data are inserted into capitalist modes of accumulation. While many of these studies are empirically grounded in single country–based analyses, this paper proposes an integrative political economy framework, structured around the concept of “global fertility chains.” The latter articulates the reproductive bioeconomy as a nexus (...)
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  • Digital epidemiology, deep phenotyping and the enduring fantasy of pathological omniscience.Lukas Engelmann - 2022 - Big Data and Society 9 (1).
    Epidemiology is a field torn between practices of surveillance and methods of analysis. Since the onset of COVID-19, epidemiological expertise has been mostly identified with the first, as dashboards of case and mortality rates took centre stage. However, since its establishment as an academic field in the early 20th century, epidemiology’s methods have always impacted on how diseases are classified, how knowledge is collected, and what kind of knowledge was considered worth keeping and analysing. Recent advances in digital epidemiology, this (...)
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