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

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...

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Published inPLoS 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
LanguageEnglish
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
Online AccessGet full text
ISSN1553-7358
1553-734X
1553-7358
DOI10.1371/journal.pcbi.1002549

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Abstract 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/).
AbstractList 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/).
  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/).
Author Dove, Edward S.
Knoppers, Bartha M.
Chalmers, Don
Joly, Yann
Bobrow, Martin
AuthorAffiliation University of California San Diego, United States of America
2 Data Access Compliance Office, International Cancer Genome Consortium, Montreal, Quebec, Canada
1 International Data Access Committee, International Cancer Genome Consortium, Toronto, Ontario, Canada
5 Faculty of Law, University of Tasmania, Tasmania, Australia
3 Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada
4 Department of Medical Genetics, University of Cambridge, Cambridge, United Kingdom
AuthorAffiliation_xml – name: 1 International Data Access Committee, International Cancer Genome Consortium, Toronto, Ontario, Canada
– name: University of California San Diego, United States of America
– name: 3 Centre of Genomics and Policy, Department of Human Genetics, Faculty of Medicine, McGill University, Montreal, Quebec, Canada
– name: 5 Faculty of Law, University of Tasmania, Tasmania, Australia
– name: 2 Data Access Compliance Office, International Cancer Genome Consortium, Montreal, Quebec, Canada
– name: 4 Department of Medical Genetics, University of Cambridge, Cambridge, United Kingdom
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Copyright 2012 Joly et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited: Joly Y, Dove ES, Knoppers BM, Bobrow M, Chalmers D (2012) Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput Biol 8(7): e1002549. doi:10.1371/journal.pcbi.1002549
Joly et al. 2012
Copyright_xml – notice: 2012 Joly et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited: Joly Y, Dove ES, Knoppers BM, Bobrow M, Chalmers D (2012) Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO). PLoS Comput Biol 8(7): e1002549. doi:10.1371/journal.pcbi.1002549
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Keywords Database Management Systems
Genomics
Humans
Databases, Genetic
International Cooperation
Neoplasms
Information Dissemination
Language English
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Snippet 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...
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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
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Title Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)
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