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  1. Big Data and Public-Private Partnerships in Healthcare and Research: The Application of an Ethics Framework for Big Data in Health and Research.Angela Ballantyne & Cameron Stewart - 2019 - Asian Bioethics Review 11 (3):315-326.
    Public-private partnerships are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector (...)
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  • Openness in Big Data and Data Repositories: The Application of an Ethics Framework for Big Data in Health and Research.Vicki Xafis & Markus K. Labude - 2019 - Asian Bioethics Review 11 (3):255-273.
    There is a growing expectation, or even requirement, for researchers to deposit a variety of research data in data repositories as a condition of funding or publication. This expectation recognizes the enormous benefits of data collected and created for research purposes being made available for secondary uses, as open science gains increasing support. This is particularly so in the context of big data, especially where health data is involved. There are, however, also challenges relating to the collection, storage, and re-use (...)
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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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  • 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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  • Can Broad Consent be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
    In biobanks, a broader model of consent is often used and justified by a range of different strategies that make reference to the potential benefits brought by the research it will facilitate combined with the low level of risk involved (provided adequate measures are in place to protect privacy and confidentiality) or a questioning of the centrality of the notion of informed consent. Against this, it has been suggested that the lack of specific information about particular uses of the samples (...)
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  • Real-world Data to Generate Evidence About Healthcare Interventions: The Application of an Ethics Framework for Big Data in Health and Research.Wendy Lipworth - 2019 - Asian Bioethics Review 11 (3):289-298.
    It is increasingly recognised that evidence generated using “real-world data” is crucial for assessing the safety and effectiveness of health-related interventions. This, however, raises a number of issues, including those related to the quality of RWD, and of the scientific methods used to generate evidence from it, and the potential for those gathering and using RWD be driven by commercial, political, professional or personal self-interest. This article is an application of the framework presented in this issue of ABR. Please refer (...)
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  • Broadening consent--and diluting ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
    Biobank research is potentially fruitful. It is argued that broad consent is acceptable for future research on biological material because a) the benefit is high, b) it pays respect to people’s autonomy, c) it is consistent with current practices and d) because the risk is low. Furthermore, broad consent should be allowed if information is handled safely, people can withdraw and expanded research should be approved by an ethics review board. However, these arguments are flawed and the criteria for broad (...)
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