caa a22 4500 445860839 CHVBK 20180317145442.0 cr unu---uuuuu 170323e20110901xx s 000 0 eng 10.1007/s00439-011-1042-5 doi (NATIONALLICENCE)springer-10.1007/s00439-011-1042-5 Identifiability in biobanks: models, measures, and mitigation strategies [Elektronische Daten] [Bradley Malin, Grigorios Loukides, Kathleen Benitez, Ellen Clayton] The collection and sharing of person-specific biospecimens has raised significant questions regarding privacy. In particular, the question of identifiability, or the degree to which materials stored in biobanks can be linked to the name of the individuals from which they were derived, is under scrutiny. The goal of this paper is to review the extent to which biospecimens and affiliated data can be designated as identifiable. To achieve this goal, we summarize recent research in identifiability assessment for DNA sequence data, as well as associated demographic and clinical data, shared via biobanks. We demonstrate the variability of the degree of risk, the factors that contribute to this variation, and potential ways to mitigate and manage such risk. Finally, we discuss the policy implications of these findings, particularly as they pertain to biobank security and access policies. We situate our review in the context of real data sharing scenarios and biorepositories. Springer-Verlag, 2011 Malin Bradley Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut Loukides Grigorios Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut Benitez Kathleen Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut Clayton Ellen Department of Pediatrics, School of Medicine, Vanderbilt, USA aut Human Genetics Springer-Verlag 130/3(2011-09-01), 383-392 0340-6717 130:3<383 2011 130 439 https://doi.org/10.1007/s00439-011-1042-5 text/html Onlinezugriff via DOI 1 research-article jats NATIONALLICENCE 856 40 https://doi.org/10.1007/s00439-011-1042-5 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Malin Bradley Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut NATIONALLICENCE 700 1- Loukides Grigorios Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut NATIONALLICENCE 700 1- Benitez Kathleen Department of Biomedical Informatics, School of Medicine, Vanderbilt University, 2525 West End Avenue, Suite 600, 37203, Nashville, TN, USA aut NATIONALLICENCE 700 1- Clayton Ellen Department of Pediatrics, School of Medicine, Vanderbilt, USA aut NATIONALLICENCE 773 0- Human Genetics Springer-Verlag 130/3(2011-09-01), 383-392 0340-6717 130:3<383 2011 130 439 Metadata rights reserved Springer special CC-BY-NC licence nationallicence BK010053 XK010053 XK010000 NATIONALLICENCE NATIONALLICENCE NL-springer