8 found
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  1.  18
    Reflections on different governance styles in regulating science: a contribution to ‘Responsible Research and Innovation’.Ine Van Hoyweghen, Jessica Mesman, David Townend & Laurens Landeweerd - 2015 - Life Sciences, Society and Policy 11 (1).
    In European science and technology policy, various styles have been developed and institutionalised to govern the ethical challenges of science and technology innovations. In this paper, we give an account of the most dominant styles of the past 30 years, particularly in Europe, seeking to show their specific merits and problems. We focus on three styles of governance: a technocratic style, an applied ethics style, and a public participation style. We discuss their merits and deficits, and use this analysis to (...)
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  2.  33
    Big Data, precision medicine and private insurance: A delicate balancing act.Ine Van Hoyweghen, Effy Vayena & Alessandro Blasimme - 2019 - Big Data and Society 6 (1).
    In this paper, we discuss how access to health-related data by private insurers, other than affecting the interests of prospective policy-holders, can also influence their propensity to make personal data available for research purposes. We take the case of national precision medicine initiatives as an illustrative example of this possible tendency. Precision medicine pools together unprecedented amounts of genetic as well as phenotypic data. The possibility that private insurers could claim access to such rapidly accumulating biomedical Big Data or to (...)
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  3.  30
    Genetic 'Risk Carriers' and Lifestyle 'Risk Takers'. Which Risks Deserve our Legal Protection in Insurance?Ine Van Hoyweghen, Klasien Horstman & Rita Schepers - 2007 - Health Care Analysis 15 (3):179-193.
    Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. To this end, ethnographic (...)
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  4.  27
    The social shaping of a diagnosis in Next Generation Sequencing.Janneke M. L. Kuiper, Pascal Borry, Danya F. Vears & Ine Van Hoyweghen - 2021 - New Genetics and Society 40 (4):425-448.
    Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illness and science and technology studies, with a focus on the construction of diagnosis and the (...)
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  5.  15
    Making global health care innovation work: standardization and localization.Nora Engel, Ine van Hoyweghen & Anja Krumeich (eds.) - 2014 - New York, NY: Palgrave-Macmillan.
    Global Health involves, among many things the intensified travelling of people, resources, technologies, knowledge, standards, and ideas. This book describes what happens when innovations are transferred to new settings: What work is needed to make them work, but also how they change the setting into which they are introduced.
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  6.  15
    How Political Cultures Affect Governance Efforts To Protect “Posted Genes”: Insights From Germany.Jonas Lander & Ine Van Hoyweghen - 2014 - American Journal of Bioethics 14 (11):50-53.
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  7.  12
    Big Tech platforms in health research: Re-purposing big data governance in light of the General Data Protection Regulation’s research exemption.Ine Van Hoyweghen, Giuseppe Testa & Luca Marelli - 2021 - Big Data and Society 8 (1).
    The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The (...)
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  8. National legal and policy responses to genetic discrimination in Europe : the difficulties of regulation.Ine Van Hoyweghen - 2015 - In Gerard Quinn, Aisling De Paor & Peter David Blanck (eds.), Genetic discrimination: transatlantic perspectives on the case for a European-level legal response. New York, NY: Routledge.
     
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