Full recordShow full item record
AbstractGenomics research promises better health at the global level and GlobalCollaborative Research is a necessary and growing component of that. Global collaborative genomics research is associated with sample and data sharing in response to need of genomics research to have access to biological samples and associated medical data in a large scale. In this sense, population biobank as a repository of biological samples and related medical and environmental data which is collected for multiple future purposes can facilitate genomics research. Data and sample sharing, however, pose new ethical and legal challenges at the global level and question adequacy and efficiency of current legal mechanisms. Concerns regarding obtaining informed consent for secondary use of data and samples, keeping confidentiality of data and respecting privacy of research participants, responsibility of steering committees in monitoring research once data and sample are transferred to other countries, ownership of samples and stewardship of data are examples of relevant ethical and legal concerns in the context of global collaborative genomics research. This research project aims to address these challenges by conducting an ethical analysis of challenges, legal review of current international guidelines and regulations, a qualitative study of experts’ opinions and attitudes along with a case study. Findings of this study will assist to close knowledge gaps in this field and provide policy makers with insights to design a governance model that suffices ethical and legal principles.
TypeDescription (Metadata) only