文章基本信息

标题：Donor rights in selected European population biobanks (in Polish)
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作者：Jakub Pawlikowski, MD, PhD
期刊名称：Diametros : an Online Journal of Philosophy
电子版ISSN：1733-5566
出版年度：2012
期号：32
出版社：Institute of Philosophy, Jagiellonian University
摘要：Population biobanks offer new opportunities for biomedical research, and are fundamental for the development of personalized medicine and public health genomics. On the other hand they demand new rules in order to guarantee donor rights (informed consent, privacy, confidentiality, non-discrimination). The main dimensions of respecting donor rights are: good communication skills with society (public consultation) and with individual donors (informed consent), appropriate biobanks organization (secure IT system, encoding and data anonymization, access to data), supervisory systems (Ethics Committees and Research Committees) and legal norms concerning the storage, management and transfer of samples and data, and non-discrimination rules. The article presents population biobanks in selected European countries (UK, Spain, Estonia) in the context of donor rights in the process of biobanking
关键词：population biobanks; donor rights; informed consent; privacy