Research Statement
- Conduct a comprehensive review of current ELSI practices in Genomic Cloud Computing.
- Develop a Code of Conduct for International Data Transfer to Enable Genomic Cloud Computing.
- Harmonize templates for consent/confidentiality/access for Genomic Cloud Computing.
- Develop software protocols that allow researchers to perform secure computations across the controlled tier without risk of donor de-identification.
-
Management Team
- Khaled El Emam, Principal Investigator
- Bartha Knoppers, Principal Investigator
-
Development Team
- Mark Phillips, Research Team
Outcomes
- The results of our qualitative empirical review of genomic cloud practices were published in PLoS One in 2016.
- We published new research that furthers and reports back on the consent and access frameworks developed in concert with ICGC’s Data Access Compliance Office..
- An initial paper on guidelines for a Code of Conduct on international data transfer in the genomic research context will soon be submitted for publication, and work on this initiative remains ongoing.
- We have also been able to research, to publish, and to present novel work on ethico-legal issues relevant to the genomic cloud beyond those included in our initial proposal, including policy frameworks around genomic anonymity, sanctions for wrongful re-identification, and a comparative view of Canadian privacy law frameworks, among others. Please see our publications and presentations listed below for further details.
Latest Publications & Presentations
Publication
PloS one, 2016;11(10):e0164347
Publication
Registered access: a 'Triple-A' approach.
European journal of human genetics : EJHG, 2016;():
Presentation
The right to science: Promoting responsible data sharing
Date: September 2016
Meeting: EMBL – Welcome Genome Campus Conference, Big Data in Biology and Health; Heidelberg, Germany
