Responsible data sharing in a big data-driven translational research platform: lessons learned.

ABSTRACT:

Background

To foster responsible data sharing in health research, ethical governance complementary to the EU General Data Protection Regulation is necessary. A governance framework for Big Data-driven research platforms will at least need to consider the conditions as specified a priori for individual datasets. We aim to identify and analyze these conditions for the Innovative Medicines Initiative's (IMI) BigData@Heart platform.

Methods

We performed a unique descriptive case study into the conditions for data sharing as specified for datasets participating in BigData@Heart. Principle investigators of 56 participating databases were contacted via e-mail with the request to send any kind of documentation that possibly specified the conditions for data sharing. Documents were q

SUBMITTER: Kalkman S 

PROVIDER: S-EPMC6936121 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature