The Tension Between Data Sharing and the Protection of Privacy in Genomics Research

Abstract

With the costs of sequencing technology falling rapidly, we are moving to a position where whole-genome scanning of individual DNA samples will start to become routine in medical research and clinical medicine. This is also a critical point in time for the building of infrastructure and the linkage of existing biobanks and bioclinical projects. These plans are starting to be operationalized to enable the sharing of data and samples in a systematic way on a large scale. However, the meta-level governance mechanisms that are needed to support this are still in development. The move to global data sharing has been facilitated by funding bodies on both sides of the Atlantic, which have supported large international collaborative projects and developed open access policies to encourage wide-scale data sharing.