Consent Codes: Upholding Standard Data Use Conditions

Stephanie O M Dyke¹, Anthony A Philippakis², Jordi Rambla De Argila^{3

4}, Dina N Paltoo⁵, Erin S Luetkemeier⁵, Bartha M Knoppers¹, Anthony J Brookes⁶, J Dylan Spalding⁷, Mark Thompson⁸, Marco Roos⁸, Kym M Boycott⁹, Michael Brudno^{10

11}, Matthew Hurles¹², Heidi L Rehm^{2

13}, Andreas Matern¹⁴, Marc Fiume¹⁵, Stephen T Sherry¹⁶

Affiliations

¹ Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
² Broad Institute of MIT and Harvard, Cambridge, Massachusetts, United States of America.
³ Centre for Genomic Regulation (CRG), Barcelona, Spain.
⁴ Universitat Pompeu Fabra (UPF), Barcelona, Spain.
⁵ Office of Science Policy, Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.
⁶ Department of Genetics, University of Leicester, Leicester, United Kingdom.
⁷ European Molecular Biology Laboratory-European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, Cambridge, United Kingdom.
⁸ Human Genetics Department, Leiden University Medical Center, Leiden, The Netherlands.
⁹ Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
¹⁰ Centre for Computational Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.
¹¹ Department of Computer Science, University of Toronto, Toronto, Ontario, Canada.
¹² Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, United Kingdom.
¹³ Department of Pathology, Brigham & Women's Hospital and Harvard Medical School, Boston, Massachusetts, United States of America.
¹⁴ Bioreference Laboratories, Inc., Elmwood Park, New Jersey, United States of America.
¹⁵ DNAstack, Toronto, Ontario, Canada.
¹⁶ National Centre for Biotechnology Information, US National Library of Medicine, Bethesda, Maryland, United States of America.

PMID: 26796797
PMCID: PMC4721915
DOI: 10.1371/journal.pgen.1005772

Consent Codes: Upholding Standard Data Use Conditions

Stephanie O M Dyke et al. PLoS Genet. 2016.

. 2016 Jan 21;12(1):e1005772.

doi: 10.1371/journal.pgen.1005772. eCollection 2016 Jan.

Authors

Affiliations

¹ Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
² Broad Institute of MIT and Harvard, Cambridge, Massachusetts, United States of America.
³ Centre for Genomic Regulation (CRG), Barcelona, Spain.
⁴ Universitat Pompeu Fabra (UPF), Barcelona, Spain.
⁵ Office of Science Policy, Office of the Director, National Institutes of Health, Bethesda, Maryland, United States of America.
⁶ Department of Genetics, University of Leicester, Leicester, United Kingdom.
⁷ European Molecular Biology Laboratory-European Bioinformatics Institute (EMBL-EBI), Wellcome Trust Genome Campus, Hinxton, Cambridge, United Kingdom.
⁸ Human Genetics Department, Leiden University Medical Center, Leiden, The Netherlands.
⁹ Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, Ontario, Canada.
¹⁰ Centre for Computational Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.
¹¹ Department of Computer Science, University of Toronto, Toronto, Ontario, Canada.
¹² Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, United Kingdom.
¹³ Department of Pathology, Brigham & Women's Hospital and Harvard Medical School, Boston, Massachusetts, United States of America.
¹⁴ Bioreference Laboratories, Inc., Elmwood Park, New Jersey, United States of America.
¹⁵ DNAstack, Toronto, Ontario, Canada.
¹⁶ National Centre for Biotechnology Information, US National Library of Medicine, Bethesda, Maryland, United States of America.

PMID: 26796797
PMCID: PMC4721915
DOI: 10.1371/journal.pgen.1005772

Abstract

A systematic way of recording data use conditions that are based on consent permissions as found in the datasets of the main public genome archives (NCBI dbGaP and EMBL-EBI/CRG EGA).

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Conflict of interest statement

The authors have declared that no competing interests exist.

References

1. The Global Alliance for Genomics and Health. http://genomicsandhealth.org.
1. Knoppers BM (2014) Framework for responsible sharing of genomic and health-related data. The HUGO Journal 8(1): 3. - PMC - PubMed
1. The Beacon Project, Global Alliance for Genomics and Health. http://www.ga4gh.org/#/beacon.
1. Legacy Consents and International Data Sharing. Prepared for GA4GH by P3G—IPAC. http://genomicsandhealth.org/files/public/GA4GH-ConsentTools-FINAL.pdf.
1. Tasse A-M (2013) From ICH to IBH in Biobanking? A Legal Perspective on Harmonization, Standardisation and Unification. Studies in Ethics, Law, and Technology 7(1). 10.1515/1941-6008.1180 - DOI

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Consent Codes: Upholding Standard Data Use Conditions

Affiliations

Consent Codes: Upholding Standard Data Use Conditions

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources