title: Pharmacogenomic data sample collection and storage: ethical issues and policy approaches.
abstract: This perspective report will focus on the ethical, legal and social issues raised by pharmacogenomic research using large population-based databases. Access to databases established or developed at the level of whole populations or communities (e.g., the Estonian Genome Project, the UK Biobank, CARTaGENE, GenomEUtwin, and so on) will become increasingly important in pharmacogenomic research for the purpose of confirming associations between genetic variations and drug-related effects. The capacity of database creators and managers, along with that of researchers, to meet the ethical issues raised by such vast public projects will determine the integration of pharmacogenomics into mainstream clinical practice.
authors.affiliation: Université de Montréal, Centre de recherche en droit public, 3101 chemin de la Tour, Montreal H3T 1J7, Canada.
authors.forename: Yann
authors.initials: Y
authors.lastname: Joly
authors.forename: Bartha M
authors.initials: BM
authors.lastname: Knoppers
mesh_terms: D016494:Computer Security; D003625:Data Collection / Q000941:ethics*; D030541:Databases, Genetic / Q000941:ethics* / Q000706:statistics & numerical data*; D006801:Humans; D007258:Informed Consent; D018973:Intellectual Property; D010597:Pharmacogenetics / Q000941:ethics* / Q000706:statistics & numerical data*