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The Governance of Genetic Information: Who Decides?

Cambridge University Press (2009)

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  1. Accountability, Governance and Biobanks: The Ethics and Governance Committee as Guardian or as Toothless Tiger? [REVIEW]Jean V. McHale - 2011 - Health Care Analysis 19 (3):231-246.
    The huge potential of biobanks/genetic databases for the research community has been recognised across jurisdictions in both publicly funded and commercial sectors. But although there is tremendous potential there are likewise potential difficulties. The long-term storage of personal health information and samples poses major challenges. This is an area is fraught with ethical and legal uncertainties. Biobanks raise many questions of the control of rights, of consent, of privacy and confidentiality and of property in human material. It is thus unsurprising (...)
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