Safeguarding donors' personal rights and biobank autonomy in biobank networks: the CRIP privacy regime.
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.
Schröder
Christina
C
Fraunhofer Institut für Biomedizinische Technik, Am Mühlenberg 13, 14476, Potsdam-Golm, Germany. christina.schroeder@ibmt.fraunhofer.de
Heidtke
Karsten R
KR
Zacherl
Nikolaus
N
Zatloukal
Kurt
K
Taupitz
Jochen
J
D003219:Confidentiality / Q000941:ethics; D006801:Humans; D007255:Information Services / Q000941:ethics / Q000458:organization & administration; D014015:Tissue Banks / Q000941:ethics / Q000458:organization & administration*; D014019:Tissue Donors / Q000941:ethics; D057188:Workflow