Those producing codes of conduct for life-sciences research under the European Union’s General Data Protection Regulation (GDPR) should draw on established international work to secure the success of scientific data sharing and the secondary processing of personal data (see also Nature 557, 467; 2018).
Important guidelines include the 2017 Recommendation on Health Data Governance from the Organisation for Economic Co-operation and Development, and the Framework for Responsible Sharing of Genomic and Health-Related Data developed by the Global Alliance for Genomics and Health (of which we are all members).
The GDPR focuses chiefly on the right to privacy. In addition, the Framework respects the right of everyone “to share in scientific advancement and its benefits” under Article 27 of the Universal Declaration of Human Rights. In our view, this wider human-rights focus will be invaluable in regulating health and genomic research, and the related proportionate interpretation and application of the GDPR.
Nature 558, 189 (2018)