Enhancing EU legal frameworks for genetics & genomics research: SIENNA project Policy Brief #2



The existing EU legal frameworks are relevant for regulating human genomic technologies and should be able to cope with many of the challenges that they pose. However, SIENNA has identified various gaps and challenges that must be addressed in order to ensure ethical and human rights respectful design, development, deployment, and use of genomic technologies, On our recent policy brief, we list some of the urgent actions required and recommendations for the European Union institutions, and the Member States.

(Image removed) The second in our series of SIENNA policy briefs targets the European Parliament, European Council and Council of the European Union, the European Commission, Medical Device Coordination Group, European Data Protection Board and European Data Protection Supervisor, and the EU Member States.

To support and ensure ethical and human rights respectful design, development, deployment, and use of genomic technologies and to advance the right to enjoy the benefits of scientific progress and its applications, we encourage policy-makers to:

  • Address ethics in regard to human genomic technologies in a more stringent and consistent way.

  • Resolve fragmentation and uncertainties regarding genetic data protection,and work towards removing obstacles to the sharing of data.

  • Develop guidance on regulation of human genetics and genomics and enhance human genomics research.

  • Address dual use of genomic technology in an effective manner.

  • Capitalize on the EU fundamental right of data protection and consider establishing a right to gen(omic) data.

Download the brief

Want the full story? This work builds on a deliverable report about enhancing existing legal frameworks for genomics, human enhancement, and AI and robotics.

Quote brief as: Santa Slokenberga. (2021, January 31). Enhancing EU legal frameworks for genetics & genomics research, SIENNA project Policy Brief #2 (Version 1.0). Zenodo





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