Data sharing in the roadmap of the future of human genetics …
Data sharing in the roadmap of the future of human genetics
Why do the majority of genetic conditions still go undiagnosed on the molecular level? What does this have to do with data sharing? And why is data sharing in human genetics not as easy as setting up a dropbox of files to share with your colleagues? In this presentation Fiona will introduce some of the core difficulties related to data sharing in human genetics, including data privacy, consent for use, data security, and why finding a way around these road blocks is essential to unlock the promise of the genomic revolution for diagnostics and research in genetic diseases.
DNAdigest works to promote and enable easier and more efficient sharing of genomics data for research. We educate and engage our local and international community about the hurdles and dilemmas for data sharing as faced from the perspective of stakeholders in academia, industry and patient communities. As part of our work we are working with our community and supporters to prototype new mechanisms and concepts for data sharing and data access.