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This article is part of the Research Topic

Big Data Ethics

Policy and Practice Reviews ARTICLE Provisionally accepted The full-text will be published soon. Notify me

Front. Genet. | doi: 10.3389/fgene.2019.00191

Big data needs big governance: best practices from Brain-CODE, the Ontario Brain Institute’s neuroinformatics platform

 Shannon C. Lefaivre1*,  Brendan Behan1,  Anthony L. Vaccarino1, 2, Kenneth R. Evans2,  Moyez Dharsee2, Tom Gee2, Costa Dafnas3, Tom Mikkelsen1 and  Elizabeth Theriault1
  • 1Ontario Brain Institute, Canada
  • 2Indoc Research, Canada
  • 3Centre for Advanced Computing, Canada

The Ontario Brain Institute (OBI) has begun to catalyze scientific discovery in the field of neuroscience through its large-scale informatics platform, known as Brain-CODE. The platform supports the capture, storage, federation, sharing and analysis of different data types across several brain disorders. Underlying the platform is a robust and scalable data governance structure which allows for the flexibility to advance scientific understanding, while protecting the privacy of research participants. Recognizing the value of an open science approach to enabling discovery, the governance structure was designed not only to support collaborative research programs, but also to support open science by making all data open and accessible in the future. OBI’s rigorous approach to data sharing maintains the accessibility of research data for big discoveries without compromising privacy and security. Taking a Privacy by Design approach to both data sharing and development of the platform has allowed OBI to establish some best practices related to large scale data sharing within Canada. The aim of this report is to highlight these best practices and develop a key open resource which may be referenced during the development of similar open science initiatives.

Keywords: Brain-code, governance, Ethics, Privacy, Open Data

Received: 29 Aug 2018; Accepted: 22 Feb 2019.

Edited by:

Dov Greenbaum, Yale University, United States

Reviewed by:

Danya Vears, Centre for Biomedical Ethics and Law (CBMER), Department of Public Health and Primary Care, KU Leuven, Belgium
Athanasios Alexiou, Novel Global Community Educational Foundation (NGCEF), Hebersham, Australia  

Copyright: © 2019 Lefaivre, Behan, Vaccarino, Evans, Dharsee, Gee, Dafnas, Mikkelsen and Theriault. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Ms. Shannon C. Lefaivre, Ontario Brain Institute, Toronto, Canada,