Bioethics & Protection of PHI

This research module aims to proactively address fragmented ethical and legal frameworks, which can constitute significant barriers to international data sharing, privacy, and cloud computing. We are developing legal and ethical tools to directly facilitate genomics research and increase the scientific value of current and planned genomic and medical databases.

Research Statement

  1. Conduct a comprehensive review of current ELSI practices in Genomic Cloud Computing.
  2. Develop a Code of Conduct for International Data Transfer to Enable Genomic Cloud Computing.
  3. Harmonize templates for consent/confidentiality/access for Genomic Cloud Computing.
  4. Develop software protocols that allow researchers to perform secure computations across the controlled tier without risk of donor de-identification.

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

Charlebois K, Palmour N, Knoppers BM, (2016)

The Adoption of Cloud Computing in the Field of Genomics Research: The Influence of Ethical and Legal Issues.

PloS one, 2016;11(10):e0164347

Publication

Dyke SO, Kirby E, Shabani M, Thorogood A, Kato K, Knoppers BM, (2016)

Registered access: a 'Triple-A' approach.

European journal of human genetics : EJHG, 2016;():

Presentation

The right to science: Promoting responsible data sharing

Presenter: Bartha Knoppers

Date: September 2016

Meeting: EMBL – Welcome Genome Campus Conference, Big Data in Biology and Health; Heidelberg, Germany

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Ontario Institute for Cancer Research

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