Controlled Access under Review: Improving the Governance of Genomic Data Access.

Mahsa Shabani,Stephanie O M Dyke,Pascal Borry,Yann Joly

doi:10.1371/journal.pbio.1002339

Mahsa Shabani, Stephanie O M Dyke + Show 2 more

Open Access

https://doi.org/10.1371/journal.pbio.1002339

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Journal: PLoS Biology	Publication Date: Dec 31, 2015
Citations: 57	License type: CC BY 4.0

Affiliation: KU Leuven, McGill University

Abstract

In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention.

Highlights

Over the last decade, sharing the data of publicly funded genomic studies is an issue that has received widespread attention in the scientific community
While some data access committee (DAC) are constructed at an institutional or consortia level, with higher formality and regular meetings, others are formed by small groups and rely on rather ad hoc meetings [4]
We argue that these core elements should be incorporated into the process of access review by both established and emerging DACs in order to best serve the interests of the various parties involved

Summary

OPEN ACCESS

In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. We highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, when they are directly involved in DACs management. In structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention. Ca/e/193.html), the Canada Research Chair in Law and Medicine (http://www.chairs-chaires.gc.ca/ chairholders-titulaires/profile-eng.aspx?profileId= 2680), and the Public Population Project in Genomics and Society (P3G) (http://www.p3g.org/).

Introduction

Objectivity of Access Review

Fairness in Terms and Conditions of Access to Data

Transparency and Accountability

Conclusion