Policy recommendations for addressing privacy challenges associated with cell-based research and interventions
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 #
BMC medical ethics vol:15 pages:7
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.