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  1. Commodification of Biomaterials and Data When Funding is Contingent to Transfer in Biobank Research. [REVIEW]Mantombi Maseme - 2021 - Medicine, Health Care and Philosophy 24 (4):667-675.
    It is common practice for biobanks and biobank researchers to seek funding from agencies that are independent of the biobank that often stipulate conditions requiring researchers to grant access and share biomaterials and data as part of the agreement, in particular, in international collaborative health research. As yet, to the author’s knowledge, there has been no study conducted to examine whether these conditions could result in the commercialization of biomaterials and data and whether such practice is considered ethical. This paper (...)
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  • The Business of Care.Henk ten Have & Bert Gordijn - 2013 - Medicine, Health Care and Philosophy 16 (2):123-124.
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  • Biobank Economics and the “Commercialization Problem”.Andrew Turner, Clara Dallaire-Fortier & Madeleine J. Murtagh - 2013 - Spontaneous Generations 7 (1):69-80.
    The economic aspects of biobanking are intertwined with the social and scientific aspects. We describe two problems that structure the discussion about the economics of biobanking and which illustrate this intertwining. First, there is a ‘sustainability problem’ about how to maintain biobanks in the long term. Second, and representing a partial response to the first problem, there is a ‘commercialisation problem’ about how to deal with the voluntary altruistic relationship between participants and biobanks, and the potential commercial relationships that a (...)
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  • 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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  • Current Status and Future Challenges of Biobank Research in Malaysia.Latifah Amin, Angelina Olesen, Zurina Mahadi & Maznah Ibrahim - 2021 - Asian Bioethics Review 13 (3):297-315.
    The establishment of MyCohort in 2005 showed that there is a growing interest on the part of the Malaysian government in the creation of biobanks in the country. This project can be considered as the biggest and most comprehensive cohort study in Malaysia, where hundreds of thousands of human samples are stored for epidemiological and biomedical research. However, little is known about the current issues or the situation related to biobank research in Malaysia. There are pressing issues that need answers (...)
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  • Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.Jenny Krutzinna, Mariarosaria Taddeo & Luciano Floridi - 2019 - Science and Engineering Ethics 25 (5):1357-1387.
    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, similar to the way in which 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 at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...)
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  • Editorial – Ethical Practice and Genomic Research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  • Motives of Contributing Personal Data for Health Research: (Non-)Participation in a Dutch Biobank.R. Broekstra, E. L. M. Maeckelberghe, J. L. Aris-Meijer, R. P. Stolk & S. Otten - 2020 - BMC Medical Ethics 21 (1):1-11.
    BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to end their (...)
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  • Organoids as Hybrids: Ethical Implications for the Exchange of Human Tissues.Sarah N. Boers, Johannes J. M. van Delden & Annelien L. Bredenoord - 2019 - Journal of Medical Ethics 45 (2):131-139.
    Recent developments in biotechnology allow for the generation of increasingly complex products out of human tissues, for example, human stem cell lines, synthetic embryo-like structures and organoids. These developments are coupled with growing commercial interests. Although commercialisation can spark the scientific and clinical promises, profit-making out of human tissues is ethically contentious and known to raise public concern. The traditional bioethical frames of gift versus market are inapt to capture the resulting practical and ethical complexities. Therefore, we propose an alternative (...)
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  • Communicating Moral Legitimacy in Controversial Industries: The Trade in Human Tissue.A. Rebecca Reuber & Anna Morgan-Thomas - 2019 - Journal of Business Ethics 154 (1):49-63.
    Globally active companies are involved in the discursive construction of moral legitimacy. Establishing normative conformance is problematic given the plurality of norms and values worldwide, and is particularly difficult for companies operating in morally controversial industries. In this paper, we investigate how organizations publicly legitimize the trade of human tissue for private profit when this practice runs counter to deep-seated and widespread moral beliefs. To do so, we use inductive, qualitative methods to analyze the website discourse of three types of (...)
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  • Biobanking and the Abandonment of Informed Consent: An Ethical Imperative.Stephanie Solomon Cargill - 2016 - Public Health Ethics 9 (3):255-263.
    There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...)
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