Safeguarding Donors' Personal Rights and Biobank Autonomy in Biobank Networks: The CRIP Privacy Regime
Heidtke, Karsten R
Cell and tissue banking 2011 Aug; 12(3): 233-40
Governance, underlying general ICT (Information and Communication Technology) architecture, and workflow of the Central Research Infrastructure for molecular Pathology (CRIP) are discussed as a model enabling biobank networks to form operational "meta biobanks" whilst respecting the donors' privacy, biobank autonomy and confidentiality, and the researchers' needs for appropriate biospecimens and information, as well as confidentiality. Tailored to these needs, CRIP efficiently accelerates and facilitates research with human biospecimens and data.
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DATA SMOG: SURVIVING the INFORMATION AGE, by David Shenk; LEGISLATION PRIVACY: TECHNOLOGY, SOCIAL VALUES, and PUBLIC POLICY, by Priscilla M. Regan; NAKED in CYBERSPACE: HOW to FIND PERSONAL INFORMATION ONLINE, by Carol A. Lane; WHO KNOWS: SAFEGUARDING YOUR PRIVACY in a NETWORKED WORLD, by Ann Cavoukian and Dan Tapscott Stevens, Norman (1999-03)