[Feindel Brain Imaging Lecture Series] Adrian Thorogood: "Embracing Open Science: Best Practices for Responsible Data Sharing"
The听Feindel听Brain Imaging Lecture Series
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Wednesday, March 9, 2016 at 2:00 pm
de Grandpr茅 Communications Centre, Montreal Neurological Institute
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"Embracing Open Science: Best Practices for Responsible Data Sharing"
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Lawyer / Academic Associate at McGill University
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(Adrian Thorogood B.A.&Sc., B.C.L.&LL.B. is a lawyer and academic associate at the Centre of Genomics听and Policy at McGill University. He is also the Coordinator of the Regulatory and Ethics Working Group of听the Global Alliance for Genomics and Health, an international consortium that promotes the responsible听sharing of research data. adrian.thorogood [at] mcgill.ca).
Genomic data sharing is imperative for accelerating discovery and translation of findings into听clinical applications, but raises concerns about privacy protection and regulatory compliance.These concerns are heightened where data is shared internationally, as applicable laws vary听considerably across countries. To ensure that genomic data is shared responsibly, best practices听have emerged in areas of consent, privacy and security, and access oversight. The challenge听ahead is to ensure these practices are harmonized internationally, or data will continue to be听fragmented into regulatory silos. Accountability will also be key for maintaining trust in data听sharing. What steps can we take to ensure data sharing standards are clearly communicated,听monitored, and enforced?
