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  1. We’Re Not in It for the Money—Lay People’s Moral Intuitions on Commercial Use of ‘Their’ Biobank.Kristin Solum Steinsbekk, Lars Øystein Ursin, John-Arne Skolbekken & Berge Solberg - 2013 - Medicine, Health Care and Philosophy 16 (2):151-162.
    Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...)
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  • The Philosophy of Information Quality.Luciano Floridi & Phyllis Illari (eds.) - 2014 - Springer International Publishing.
    This work fulfills the need for a conceptual and technical framework to improve understanding of Information Quality (IQ) and Information Quality standards. The meaning and practical implementation of IQ are addressed, as it is relevant to any field where there is a need to handle data and issues such as accessibility, accuracy, completeness, currency, integrity, reliability, timeliness, usability, the role of metrics and so forth are all a part of Information Quality. -/- In order to support the cross-fertilization of theory (...)
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  • Solidarity in Biomedicine and Beyond.Barbara Prainsack & Alena Buyx - 2016 - Cambridge University Press.
    In times of global economic and political crises, the notion of solidarity is gaining new currency. This book argues that a solidarity-based perspective can help us to find new ways to address pressing problems. Exemplified by three case studies from the field of biomedicine: databases for health and disease research, personalised healthcare, and organ donation, it explores how solidarity can make a difference in how we frame problems, and in the policy solutions that we can offer.
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  • Enabling Posthumous Medical Data Donation: A Plea for the Ethical Utilisation of Personal Health Data.Luciano Floridi, Mariarosaria Taddeo & Jenny Krutzinna - 2019 - In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag.
    This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, in a way similar to how they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute. Ten arguments are provided to support the need to foster posthumous medical data donation. Two major risks are also (...)
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  • Ethical Sharing of Health Data in Online Platforms- Which Values Should Be Considered?Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo & Vojin Rakic - 2017 - Life Sciences, Society and Policy 13 (1):1-27.
    Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...)
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  • The “We” in the “Me”: Solidarity and Health Care in the Era of Personalized Medicine.Barbara Prainsack - 2018 - Science, Technology, and Human Values 43 (1):21-44.
    This article challenges a key tacit assumption underpinning legal and ethical instruments in health care, namely, that people are ideally bounded, independent, and often also strategically rational individuals. Such an understanding of personhood has been criticized within feminist and other critical scholarship as being unfit to capture the deeply relational nature of human beings. In the field of medicine, however, it also causes tangible problems. I propose that a solidarity-based perspective entails a relational approach and as such helps to formulate (...)
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  • Scientific Research is a Moral Duty.J. Harris - 2005 - Journal of Medical Ethics 31 (4):242-248.
    Biomedical research is so important that there is a positive moral obligation to pursue it and to participate in itScience is under attack. In Europe, America, and Australasia in particular, scientists are objects of suspicion and are on the defensive.i“Frankenstein science”5–8 is a phrase never far from the lips of those who take exception to some aspect of science or indeed some supposed abuse by scientists. We should not, however, forget the powerful obligation there is to undertake, support, and participate (...)
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  • “We the Scientists”: A Human Right to Citizen Science.Effy Vayena & John Tasioulas - 2015 - Philosophy and Technology 28 (3):479-485.
    The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right—the entitlement it confers on all human beings to participate in the scientific process in all of (...)
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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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