• Publications
  • Influence
International Charter of principles for sharing bio-specimens and data
There is a growing international agreement on the need to provide greater access to research data and bio-specimen collections to optimize their long-term value and exploit their potential for healthExpand
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Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)
TLDR
We present the Data Access Compliance Office (DACO) of the International Cancer Genome Consortium (ICGC). Expand
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Data Safe Havens in health research and healthcare
TLDR
We propose 12 criteria that ought reasonably to be met by a data repository if it is to be seen as consistent with this interpretation and viewed as worthy of being accorded the status of Data Safe Haven. Expand
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All the post-genomic world is a stage: the actors and narrators required for translating pharmacogenomics into public health.
Author for correspondence: Research Group on Complex Collaboration, Faculty of Management, McGill University, 1001 Sherbrooke Street West, Montreal, QC H3A 1G5, Canada and Centre of Genomics andExpand
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Designing a post-genomics knowledge ecosystem to translate pharmacogenomics into public health action
Translation of pharmacogenomics to public health action is at the epicenter of the life sciences agenda. Post-genomics knowledge is simultaneously co-produced at multiple scales and locales byExpand
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Genomic cloud computing: legal and ethical points to consider
TLDR
The biggest challenge in twenty-first century data-intensive genomic science, is developing vast computer infrastructure and advanced software tools to perform comprehensive analyses of genomic data sets for biomedical research and clinical practice. Expand
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Beyond individualism: Is there a place for relational autonomy in clinical practice and research?
The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interestedExpand
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Building a data sharing model for global genomic research
TLDR
A flexible, externally endorsed, multilateral arrangement, combined with an objective third-party assurance mechanism, can effectively balance privacy with the need to share genomic data globally. Expand
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Emerging issues in paediatric health research consent forms in Canada: working towards best practices
BackgroundObtaining a research participant’s voluntary and informed consent is the bedrock of sound ethics practice. Greater inclusion of children in research has led to questions about howExpand
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Power to the people: a wiki-governance model for biobanks
Biobanks are adopting various modes of public engagement to close the agency gap between participants and biobank builders. We propose a wiki-governance model for biobanks that harnesses Web 2.0, andExpand
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