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