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  1. Bioethics and large-scale biobanking: individualistic ethics and collective projects.Garrath Williams - 2005 - Genomics, Society and Policy 1 (2):1-17.
    Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects’ rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience (...)
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  • Forensic DNA databases: genetic testing as a societal choice.A. Patyn & K. Dierickx - 2010 - Journal of Medical Ethics 36 (5):319-320.
    In this brief report, the authors argue that while a lot of concerns about forensic DNA databases have been raised using arguments from biomedical ethics, these databases are used in a complete different context from other biomedical tools. Because they are used in the struggle against crime, the decision to create or store a genetic profile cannot be left to the individual. Instead, this decision is made by officials of a society. These decisions have to be based on a policy (...)
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  • Constructing Participation in Genetic Databases: Citizenship, Governance, and Ambivalence.Richard Tutton - 2007 - Science, Technology, and Human Values 32 (2):172-195.
    This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ (...)
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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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  • Why Communities and Their Goods Matter: Illustrated with the Example of Biobanks.Heather Widdows & Sean Cordell - 2011 - Public Health Ethics 4 (1):14-25.
    It is now being recognized across the spectrum of bioethics, and particularly in genetics and population ethics, that to focus on the individual person, and thereby neglect communities and the goods which accrue to them, is to fail to see all the ethically significant features of a range of ethical issues. This article argues that more work needs to be done in order for bioethics to respect not only goods (such as rights and interests) of communities per se, but also (...)
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  • Solidaroty and equity : new ethical frameworks for genetic databases.Ruth Chadwick & Kåre Berg - 2001 - .
    Genetic database initiatives have given rise to considerable debate about their potential harms and benefits. The question arises as to whether existing ethical frameworks are sufficient to mediate between the competing interests at stake. One approach is to strengthen mechanisms for obtaining informed consent and for protecting confidentiality. However, there is increasing interest in other ethical frameworks, involving solidarity — participation in research for the common good — and the sharing of the benefits of research.
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  • Ethical-legal problems of DNA databases in criminal investigation.M. Guillen - 2000 - Journal of Medical Ethics 26 (4):266-271.
    Advances in DNA technology and the discovery of DNA polymorphisms have permitted the creation of DNA databases of individuals for the purpose of criminal investigation.Many ethical and legal problems arise in the preparation of a DNA database, and these problems are especially important when one analyses the legal regulations on the subject.In this paper three main groups of possibilities, three systems, are analysed in relation to databases. The first system is based on a general analysis of the population; the second (...)
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  • The retention of forensic DNA samples: a socio-ethical evaluation of current practices in the EU.N. Van Camp & K. Dierickx - 2008 - Journal of Medical Ethics 34 (8):606-610.
    Since the mid-1990s most EU Member States have established a national forensic DNA database. These mass repositories of DNA profiles enable the police to identify DNA stains which are found at crime scenes and are invaluable in criminal investigation. Governments have always brushed aside privacy objections by stressing that the stored DNA profiles do not contain sensitive genetic information on the included individuals and that they reside under the statutory privacy protection regulations. However, it has been generally overlooked that the (...)
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