Federated Networks for Genomic Data Discovery, Analysis and Sharing: Ethical and Legal Challenges

Recently, in an effort to facilitate genomic data discovery, analysis and sharing, increasing attention has been paid to the development of federated networks for data sharing. Federated networks for genomic data sharing are based on web-services which may be distributed across many databases and computers around the world but virtually connected through software interfaces. Federated networks are perceived to be advantageous as they aim to overcome the inefficiency, expense, and security risks of transferring datasets to central repositories, often across international boundaries (i.e. centralized approach). The uncertainties emerge about the adequate ethical and legal frameworks for data discovery, analysis and sharing through federated networks in the view of the privacy, consent and data access authorization concerns. We aim for analyzing the adequacy of the policies of the current federated networks for genomic data sharing in the view of overarching guidelines and recommendations for genomic and health data sharing. In addition, we will investigate the experiences and attitudes of the network developers, and data submitter with regard to the ethical and legal challenges associated with data sharing through federated networks, and explore their suggestions in response to such concerns. The results of this project will be of great importance for development of robust ethical and legal framework for genomic data discovery, analysis and sharing through federated networks.