To share or not to share is the question

摘要

Data sharing is increasingly becoming an essential component of clinical practice and biomedical research. The debate has shifted from whether or not to exchange data to how best to achieve optimal sharing. This raises new ethical and legal challenges, particularly with regard to consent and privacy. This article discusses recent developments in the formulation of best practice guidelines for data sharing. Particular attention is focused on the Global Alliance for Genomics and Health (GA4GH) draft Framework of Conduct for Data Sharing.