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Ruth Chadwick & Kåre Berg (2001). Solidaroty and Equity : New Ethical Frameworks for Genetic Databases.

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  1.  3
    Human Dignity as a Basis for Providing Post-Trial Access to Healthcare for Research Participants: A South African Perspective.Pamela Andanda & Jane Wathuta - 2018 - Medicine, Health Care and Philosophy 21 (1):139-155.
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  2.  10
    From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...)
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  3.  6
    Public Participation in Genetic Databases: Crossing the Boundaries Between Biobanks and Forensic DNA Databases Through the Principle of Solidarity.Helena Machado & Susana Silva - 2015 - Journal of Medical Ethics 41 (10):820-824.
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  4.  8
    ‚Mirroring' the Ethics of Biobanking: What Analysis of Consent Documents Can Tell Us?Serepkaite Jurate, Valuckiene Zivile & Gefenas Eugenijus - 2014 - Science and Engineering Ethics 20 (4):1-15.
    Biobanks have been recognized as a key research infrastructure and how to approach ethical questions has been a topic of discussion for at least a decade by now. This article explores the characteristics of donors’ participation in European biobanks as reflected in the consent documents of a selection of different biobanks from various European countries. The primary aim of this study is to understand how donors are informed about their participation in biobanking. Also the paper discusses what the most important (...)
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    Privacy Revisited? Old Ideals, New Realities, and Their Impact on Biobank Regimes.Arndt Bialobrzeski, Jens Ried & Peter Dabrock - 2011 - Poiesis and Praxis 8 (1):9-24.
    Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate in such research. In this article, ethical frameworks stressing the societal value of low-privacy expectations in order to secure biomedical research are discussed. It will turn out that neither utilitarian nor communitarian (...)
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  6.  4
    The Informed Consent Aftermath of the Genetic Revolution. An Italian Example of Implementation.Federica Artizzu - 2008 - Medicine, Health Care and Philosophy 11 (2):181-190.
    A great part of human genetics research is carried out collecting data and building large databases of biological samples that are in a non-anonymous format. These constitute a valuable resource for future research. The construction of such databases and tissue banks facilitates important scientific progress. However, biobanks have been recognized as ethically problematic because they contain thousands of data that could expose individuals and populations to discrimination, stigmatization and psychological stress if misused. Informed consent is regarded as a cornerstone in (...)
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  7.  20
    Donor Perspectives on Issues Associated with Donation of Genetic Samples and Information: An Australian Viewpoint. [REVIEW]Margaret Otlowski - 2007 - Journal of Bioethical Inquiry 4 (2):135-150.
    This paper provides a legal overview of key issues associated with donation of genetic samples and information from a donor perspective. In particular, it addresses the property status of samples as well as issues in respect of consent, privacy, commercialisation and benefit sharing. The paper highlights the need for appropriate protection and safeguards for individuals, but also, importantly, for understanding what donors actually think and want in terms of genetic research and the use of their samples and information. The paper (...)
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  8.  23
    Solidarity: A (New) Ethic for Global Health Policy. [REVIEW]Shawn H. E. Harmon - 2006 - Health Care Analysis 14 (4):215-236.
    This article explores solidarity as an ethical concept underpinning rules in the global health context. First, it considers the theoretical conceptualisation of the value and some specific duties it supports (ie: its expression in the broadest sense and its derivative action-guiding duties). Second, it considers the manifestation of solidarity in two international regulatory instruments. It concludes that, although solidarity is represented in these instruments, it is often incidental. This fact, their emphasis on other values and their internal weaknesses diminishes the (...)
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  9.  30
    The Complexities of Ethical Evaluation of Genomics Research.R. Hoedemaekers, B. Gordijn, Y. Hekster & F. Van Agt - 2006 - HEC Forum 18 (1):18-36.
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