Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)

• Published in: PLoS computational biology Vol. 8; no. 7; p. e1002549
• Main Authors: Joly, Yann, Dove, Edward S., Knoppers, Bartha M., Bobrow, Martin, Chalmers, Don
• Format: Journal Article
• Language: English
• Published: United States Public Library of Science 2012; Public Library of Science (PLoS)
• Subjects: Biology; Computer Science; Database Management Systems - ethics; Database Management Systems - legislation & jurisprudence; Database Management Systems - organization & administration; Databases, Genetic; Epidemiology; Extranets; Financial services; Genomics; Genomics - ethics; Genomics - legislation & jurisprudence; Genomics - organization & administration; Genotypes; Humans; Information Dissemination - ethics; Information Dissemination - legislation & jurisprudence; Information Dissemination - methods; International Cooperation; Malaria; Medical research; Neoplasms - genetics; Privacy; Research ethics; Science Policy; Social and Behavioral Sciences; Studies; Vector-borne diseases; Database Management Systems; Genomics; Humans; Databases, Genetic; International Cooperation; Neoplasms; Information Dissemination
• ISSN: 1553-7358; 1553-734X; 1553-7358
• DOI: 10.1371/journal.pcbi.1002549

ICGC and the Development of Controlled Access Policies Controlled access mechanisms may be viewed as the product of dual imperatives: 1) the legal and ethical requirements of regulators and research ethics committees, as well as research funders and study participants, to protect the confidentiality of data from re-identification and misuse by third parties; and 2) pressure, largely from within the science community, to protect data-producing investigators from acts of free riding by other members of the community (e.g., by ensuring they are properly acknowledged in publications and that no parasitic patents are deposited on the data by subsequent data users). Early models of databases having a two-tiered open/controlled access system included the database of Genotypes and Phenotypes (dbGaP) at the US National Institutes of Health (http://www.ncbi.nlm.nih.gov/gap), the Wellcome Trust Case Control Consortium (WTCCC) (http://www.wtccc.org.uk/), the Malaria Genomic Epidemiology Network (MalariaGEN) (http://www.malariagen.net/), and the European Genome-phenome Archive (EGA) (https://www.ebi.ac.uk/ega/).