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  1. Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (S1):122-128.
    Biomedical research using data from participants’ mobile devices borrows heavily from the ethos of the “citizen science” movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science (...)
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  • Genome Justice: Genetics and Group Rights.Rebecca Tsosie & Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):352-355.
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  • Fragments of the Body in Christian, Bioethical and Social Imaginaries.Paul Scherz - 2017 - Studies in Christian Ethics 30 (4):449-463.
    Human tissue samples are essential to biomedical research, but recent controversies reveal disagreement over how to relate these fragments to donors. Deidentification has become impossible, a property model contravenes legal and religious traditions, and there is conflict over procedures for informed consent. While Michael Banner draws on Augustine and ethnographies to emphasize the role of fragments of the body in mourning, ethnographies actually suggest that many people believe that tissues and organs retain an ongoing connection to their donors. The Christian (...)
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  • Population Genomics and Research Ethics with Socially Identifable Groups.Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):356-370.
    In this paper, the author questions whether the research ethics guidelines and procedures are robust enough to protect groups when conducting genetics research with socially identifiable populations, particularly with Native American groups. The author argues for a change in the federal guidelines in substance and procedures of conducting genetic research with socially identifiable groups.
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  • What can data trusts for health research learn from participatory governance in biobanks?Richard Milne, Annie Sorbie & Mary Dixon-Woods - forthcoming - Journal of Medical Ethics.
    New models of data governance for health data are a focus of growing interest in an era of challenge to the social licence. In this article, we reflect on what the data trust model, which is founded on principles of participatory governance, can learn from experiences of involving and engagement of members of the public and participants in the governance of large-scale biobanks. We distinguish between upstream and ongoing governance models, showing how they require careful design and operation if they (...)
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  • Population Genomics and Research Ethics with Socially Identifiable Groups.Joan L. McGregor - 2007 - Journal of Law, Medicine and Ethics 35 (3):356-370.
    The genetic revolution is well underway, with genetic research and knowledge expanding at an exponential rate. Much of the new genetics research is focused on population groups, and proponents of “population genomics” argue that such studies are necessary since genetic “variation” among human populations holds the most promise for technological innovations that can improve human health and lead to increased understanding of the origin of human populations. Population genomic research thus targets specific groups to discover variation that could lead to (...)
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  • Better governance starts with better words: why responsible human tissue research demands a change of language.Annelien L. Bredenoord, Sarah N. Boers, Karin R. Jongsma & Michael A. Lensink - 2022 - BMC Medical Ethics 23 (1):1-10.
    The rise of precision medicine has led to an unprecedented focus on human biological material in biomedical research. In addition, rapid advances in stem cell technology, regenerative medicine and synthetic biology are leading to more complex human tissue structures and new applications with tremendous potential for medicine. While promising, these developments also raise several ethical and practical challenges which have been the subject of extensive academic debate. These debates have led to increasing calls for longitudinal governance arrangements between tissue providers (...)
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  • The Biobank as an Ethical Subject.Sean Cordell - 2011 - Health Care Analysis 19 (3):282-294.
    This paper argues that a certain way of thinking about the function of the biobank—about what it does and is constructed for as a social institution aimed at ‘some good’—can and should play a substantial role in an effective biobanking ethic. It first exemplifies an ‘institution shaped gap’ in the current field of biobanking ethics. Next the biobank is conceptualized as a social institution that is apt for a certain kind of purposive functional definition such that we know it by (...)
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  • Marking Shifts in Human Research Ethics in the Development of Biobanking.D. Chalmers, M. Burgess, K. Edwards, J. Kaye, E. M. Meslin & D. Nicol - 2015 - Public Health Ethics 8 (1):63-71.
    Biobanks are increasingly being created specifically for research purposes. Concomitantly, we are seeing significant and evolving shifts in research ethics in relation to biobanking. Three discrete shifts are identified in this article. The first extends the ethical focus beyond the protection of human subjects to the promotion of broader community benefits of research utilizing biobanked resources, and an expectation that these benefits will be shared. The second involves the evolution of the traditional consent paradigm for future research uses of biobanks (...)
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  • Models of biobanks and implications for reproductive health innovation.Benjamin Capps - 2015 - Monash Bioethics Review 33 (4):238-257.
    Biobanks are designed with particular purposes in mind. These purposes are reflected in the governance frameworks that define the conditions for participation and access by researchers. In this paper, I analyse two different models: the commercially aligned deCODE biobank and the ‘public good’ framework of UK Biobank. These diametric models have both featured ‘the public interest’ as pivotal to their achievements. However, if properly understood, the public interest rhetoric of deCODE actually conflicts with any professed community interest. The reasons why (...)
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