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Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)

Citation

Joly, Y and Dove, ES and Knoppers, BM and Bobrow, M and Chalmers, D, Data sharing in the post-genomic world: the experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO), PLoS Computational Biology, 8, (7) Article e1002549. ISSN 1553-7358 (2012) [Refereed Article]


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Licensed under Creative Commons Attribution 3.0 Unported (CC BY 3.0) http://creativecommons.org/licenses/by/3.0/

DOI: doi:10.1371/journal.pcbi.1002549

Abstract

The scientific community, research funders, and governments have repeatedly recognized the importance of open access to genomic data for scientific research and medical progress. Open access is becoming a well-established practice for large-scale, publicly funded, data-intensive community science projects, particularly in the field of genomics. Given this consensus, restrictions to open access should be regarded as exceptional and treated with caution. Yet, several developments have led scientists and policymakers to investigate and implement open access restrictions. Notably, there are privacy concerns within the genomics community and critiques from some researchers that open access, if left completely unregulated, could raise significant scientific, ethical, and legal issues (e.g., quality of the data, appropriate credit to data generators, relevance of the system for small and medium projects, etc.). A recent paper by Greenbaum and colleagues in this journal identified protecting the privacy of study participants as the main challenge to open genomic data sharing.

One possible way to reconcile open data sharing with privacy concerns is to use a tiered access system to separate access into "open" and "controlled." Open access remains the norm for data that cannot be linked with other data to generate a dataset that would uniquely identify an individual. A controlled access mechanism, on the other hand, regulates access to certain, more sensitive data (e.g., detailed phenotype and outcome data, genome sequences files, raw genotype calls) by requiring third parties to apply to a body (e.g., custodian, original data collectors, independent body, or data access committee) and complete an access application that contains privacy safeguards. This mechanism, while primarily designed to protect study participants, can also be used to protect investigators, database hosting institutions, and funders from perceptions or acts of favoritism or impropriety. The experience of controlled access bodies to date has been only minimally documented in the literature. To address this lacuna, we present the experience of the Data Access Compliance Office (DACO) of the International Cancer Genome Consortium (ICGC). The goal is to provide information on this increasingly important type of database governance body.

Item Details

Item Type:Refereed Article
Keywords:access to information, article, data analysis, data mining, data synthesis, genetic database, genetic privacy, information dissemination, information technology, policy, research ethics
Research Division:Law and Legal Studies
Research Group:Law
Research Field:Law not elsewhere classified
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the Law
Objective Field:Justice and the Law not elsewhere classified
Author:Chalmers, D (Professor Don Chalmers)
ID Code:81835
Year Published:2012
Web of Science® Times Cited:38
Deposited By:Law
Deposited On:2013-01-09
Last Modified:2017-11-20
Downloads:618 View Download Statistics

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