University of Tasmania
81835 - Data Sharing in the Post-Genomic World.pdf (351.01 kB)

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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journal contribution
posted on 2023-05-17, 15:16 authored by Joly, Y, Dove, ES, Knoppers, BM, Bobrow, M, Donald ChalmersDonald Chalmers

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.


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PLoS Computational Biology





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Faculty of Law


International Society for Computational Biology

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Licensed under Creative Commons Attribution 3.0 Unported (CC BY 3.0)

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Justice and the law not elsewhere classified