Governance of Genomic Data Access for Research Purposes

* p>Genomics research promises better health at the global level and GlobalCollaborative Researc h is a necessary and growing component of tha t. Global collaborative genomics research is associated with sample and data sharing in response to need of genomics research to h ave access to biological samples and associat ed medical data in a large scale. In this sen se, population biobank as a repository of biologic al samples and related medical and environmental d ata which is collected for multiple future purpose s can facilitate genomics research. Data and sample sharing, however, pose new ethical and legal challenges at the global level an d question adequacy and efficiency of current legal mechanisms. Concerns regarding obtaini ng informed consent for secondary use of data and samples, keeping confidentiality of ¨data and respecting privacy of research part icipants, responsibility of steering committe es in monitoring research once data and¨ sample are transferred to other countries, ow nership of samples and stewardship of data ar e examples of relevant ethical and legal conc erns in the context of global collaborat ive genomics research. This research project aims¨ to address these challenges by conducting an= ¨ ethical analysis of challenges, legal review of cu rrent internat of experts&r squo; opinions and attitudes along with a case study. Findings of this study will ass ist to close knowledge gaps in this field and prov ide policy makers with insights to design a govern ance model that suffices ethical and leg al principles./p>status: publishe