Resumen de Ethical and legal considerations in genomic data sharing: Evolution of the discourse and the road ahead
Adrian Thorogood, Davit Chokoshvili
The importance of genomic data sharing has long been recognized across a range of contexts, from community resource projects to biomedical research seeking insights into diseases, to the provision of personalized healthcare. However, so far, the opportunities of genomic data sharing at scale have not been fully realized. This chapter explores some of the main ethical and legal issues posed by genomic data sharing among institutions and across jurisdictions. The most vexing issues stem from concerns over data privacy and security, consent, and protection of data subjects’ fundamental rights. Additional challenges relate to meeting legal consent and transparency requirements in some jurisdictions (including the European Union) where the recipients and uses of data cannot be fully specified in advance. Ethical and legal data governance frameworks play an important role in addressing these concerns and enabling responsible data sharing. Divergence between regulatory frameworks, privacy protection, consent models, and governance frameworks across contexts and countries remain a barrier to scale data sharing across networks, but can be addressed through a combination of institutional coordination and creative infrastructure design.
