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  1. The ethics of big data: current and foreseeable issues in biomedical contexts.Brent Daniel Mittelstadt & Luciano Floridi - 2016 - Science and Engineering Ethics 22 (2):303–341.
    The capacity to collect and analyse data is growing exponentially. Referred to as ‘Big Data’, this scientific, social and technological trend has helped create destabilising amounts of information, which can challenge accepted social and ethical norms. Big Data remains a fuzzy idea, emerging across social, scientific, and business contexts sometimes seemingly related only by the gigantic size of the datasets being considered. As is often the case with the cutting edge of scientific and technological progress, understanding of the ethical implications (...)
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  • An Ethics Framework for Big Data in Health and Research.Vicki Xafis, G. Owen Schaefer, Markus K. Labude, Iain Brassington, Angela Ballantyne, Hannah Yeefen Lim, Wendy Lipworth, Tamra Lysaght, Cameron Stewart, Shirley Sun, Graeme T. Laurie & E. Shyong Tai - 2019 - Asian Bioethics Review 11 (3):227-254.
    Ethical decision-making frameworks assist in identifying the issues at stake in a particular setting and thinking through, in a methodical manner, the ethical issues that require consideration as well as the values that need to be considered and promoted. Decisions made about the use, sharing, and re-use of big data are complex and laden with values. This paper sets out an Ethics Framework for Big Data in Health and Research developed by a working group convened by the Science, Health and (...)
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  • Beyond Consent: Seeking Justice in Research.Jeffrey P. Kahn, Anna C. Mastroianni & Jeremy Sugarman (eds.) - 1998 - Oup Usa.
    Beyond Consent examines the concept of justice, and its application to human subject research, through the different lenses of various research populations: children, the vulnerable sick, captive and convenient populations, women, people of colour, and subjects in international settings. Separate chapters address the evolution of research policies, implications of the concept of justice for the future of human subject research, and the ramifications of this concept throughout the research enterprise.
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  • Adjusting the focus: A public health ethics approach to data research.Angela Ballantyne - 2019 - Bioethics 33 (3):357-366.
    This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data (...)
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  • Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.Mhairi Aitken, Jenna de St Jorre, Claudia Pagliari, Ruth Jepson & Sarah Cunningham-Burley - 2016 - BMC Medical Ethics 17 (1):73.
    BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses (...)
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  • The acceptability of conducting data linkage research without obtaining consent: lay people’s views and justifications.Vicki Xafis - 2015 - BMC Medical Ethics 16 (1):79.
    A key ethical issue arising in data linkage research relates to consent requirements. Patients’ consent preferences in the context of health research have been explored but their consent preferences regarding data linkage specifically have been under-explored. In addition, the views on data linkage are often those of patient groups. As a result, little is known about lay people’s views and their preferences about consent requirements in the context of data linkage. This study explores lay people’s views and justifications regarding the (...)
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  • Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Shona Kalkman, Johannes van Delden, Amitava Banerjee, Benoît Tyl, Menno Mostert & Ghislaine van Thiel - 2022 - Journal of Medical Ethics 48 (1):3-13.
    IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ (...)
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  • Cross-Sectoral Big Data: The Application of an Ethics Framework for Big Data in Health and Research.Graeme T. Laurie - 2019 - Asian Bioethics Review 11 (3):327-339.
    Discussion of uses of biomedical data often proceeds on the assumption that the data are generated and shared solely or largely within the health sector. However, this assumption must be challenged because increasingly large amounts of health and well-being data are being gathered and deployed in cross-sectoral contexts such as social media and through the internet of things and wearable devices. Cross-sectoral sharing of data thus refers to the generation, use and linkage of biomedical data beyond the health sector. This (...)
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