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