Title: Policy recommendations for addressing privacy challenges associated with cell-based research and interventions
Authors: Ogbogu, Ubaka ×
Burningham, Sarah
Ollenberger, Adam
Calder, Kathryn
Du, Li
El Emam, Khaled
Hyde-Lay, Robyn
Isasi, Rosario
Joly, Yann
Kerr, Ian
Malin, Bradley
McDonald, Michael
Penney, Steven
Piat, Gayle
Roy, Denis-Claude
Sugarman, Jeremy
Vercauteren, Suzanne
Verhenneman, Griet
West, Lori
Caulfield, Timothy #
Issue Date: Feb-2014
Series Title: BMC medical ethics vol:15 pages:7
Article number: 10.1186/1472-6939-15-7
Abstract: The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors' clinical information for research and regulatory purposes, and existing practices that limit research participants' ability to control what is done with their genetic data, amplify the privacy concerns.
ISSN: 1472-6939
Publication status: published
KU Leuven publication type: IT
Appears in Collections:Research Unit KU Leuven Centre for IT & IP Law (CiTiP)
× corresponding author
# (joint) last author

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