The evolution of genomic research and its integration into clinical practice, as they become
international—even global—endeavors, has brought us to a place where scientists and …

Genetic data contain sensitive health and non-health-related information about the
individuals and their family members. Therefore, adopting adequate privacy safeguards is …

Data sharing is increasingly regarded as an ethical and scientific imperative that advances
knowledge and thereby respects the contributions of the participants. Because of this and …

The EU member states' healthcare and health-related research sectors are both
characterized by an emerging infrastructural coalescence on a national and European level …

On May 25, 2018, the General Data Protection Regulation (GDPR) 1 took full legal effect
across the European Union (EU) and, subsequently, the European Economic Area (EEA), 2 …

Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved
more comprehensively and quickly by combining large, information-rich datasets from …

There is a growing international agreement on the need to provide greater access to
research data and bio-specimen collections to optimize their long-term value and exploit …

The General Data Protection Regulation1 (GDPR) introduces a new and seemingly quite far-
reaching exemption to the general prohibition for the processing of genetic data. Namely …

Abstract The General Data Protection Regulation (GDPR) came into force in May 2018. The
aspiration of providing for a high level of protection to individuals' personal data risked …

1. Purpose The purpose of this Framework is to provide a principled and practical framework
for the responsible sharing of genomic and health-related data. Its primary goals are to: i …