Towards biobank privacy regimes in responsible innovation societies: ESBB conference in Granada 2012.
作者： Georg Lauss , Christina Schröder , Peter Dabrock , Johann Eder , Kay Hamacher
关键词: Information privacy 、 Information needs 、 Autonomy 、 Dignity 、 Internet privacy 、 Privacy by Design 、 Medicine 、 Data Protection Act 1998 、 Privacy policy 、 Environmental resource management 、 Biobank
摘要: The creation of socially and technically robust biobank privacy regimes presupposes knowledge compliance with legal rules, professional standards the biomedical community, state-of-the-art data safety security measures. strategies in management protection presented this review show a trend that goes beyond searching for compromises or efforts balancing scientific demands efficiency societal effective regimes. They focus on developing synergies facilitate cooperative use biomaterials enhance sample search researchers one hand, protect rights interests donors citizens other hand. Among issues covered are: a) ethical sensitivities public perceptions biobanking b) tools procedures allow maintenance dignity donors, without jeopardizing legitimate information needs autonomy biobanks, c) se...
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