D5.6: Recommendations for the enhancement of the existing legal frameworks for genomics, human enhancement, and AI and robotics [WP5 – The consortium’s proposals] Lead contributors Konrad Siemaszko, Helsinki Foundation for Human Rights [email protected] Rowena Rodrigues, Trilateral Research (AI and robotics section; inputs to methodology; review); Santa Slokenberga, Uppsala University (human genetics and genomics section; review) Other contributors Nicole Santiago, Anaïs Rességuier, Trilateral Research (AI and robotics section; inputs to methodology; review) Feedback: Amal Matar, Mats G. Hansson, Uppsala University (feedback on human genetics and genomics section and alignment with Task 5.2); Zuzanna Warso, Helsinki Foundation for Human Rights (feedback on draft human enhancement section) Acknowledgments We acknowledge the inputs from the SIENNA webinars participants including David W. Wood, London Futurists and additionally, Getter Paberits, F-Secure Corporation (AI and robotics). Reviewers: Roger Brownsword, TELOS, King's College London and Bournemouth University; Philip Brey, University of Twente; Maria Bottis, Ionian University; Katharina Ó Cathaoir, University of Copenhagen (human genetics and genomics section) Due date 31 July 2020 Delivery date 30 July 2020 Type Report Dissemination level PU = Public Keywords artificial intelligence, legal frameworks, genomics, human enhancement, human genetics, recommendations, regulation, robotics The SIENNA project - Stakeholder-informed ethics for new technologies with high socio-economic and human rights impact - has received funding under the European Union’s H2020 research and innovation programme under grant agreement No 741716. © SIENNA, 2020 This work is licensed under a Creative Commons Attribution 4.0 International License 741716 – SIENNA – D5.6 Deliverable report Abstract This report identifies potential changes needed in the existing legal and human rights frameworks (international, EU and national) that might be necessary or desirable to create an environment in which the SIENNA proposals for ethical human genetics and genomics, human enhancement technologies and AI and robotics could be implemented most effectively. It also includes recommendations to improve enforcement and promote the uptake and effectiveness of the existing legislation in these fields. The desired or necessary changes advanced are specified in the report along with related actions, actors responsible for implementing them, their priority levels, implementation challenges and how these could be addressed. The report also discusses the interrelations between ethics and law from the perspective of policymakers. Document history Version Date Description Reason for change Distribution V1.0 6.07.2020 First draft D 5.6 contributors and reviewers V2.0 30.07.2020 Final version Address feedback SIENNA partners, and comments European from partners and Commission reviewers. Information in this report that may influence other SIENNA tasks Linked task Points of relevance Task 6.2: Adapt and exploit methods Task 6.2 draws on the results included here (to analyse the possibilities for the general application of our approach for legal and human rights analysis, with reference to other types of future and emerging technologies). Task 6.4: Obtain buy-in for SIENNA Task 6.4 will disseminate and/or exploit the recommendations proposals from EU and international advanced here through liaising with organisations at the institutions international, EU or national levels to obtain buy-in for them. 2 741716 – SIENNA – D5.6 Deliverable report Table of contents Table of contents ..................................................................................................................................... 3 Executive summary ................................................................................................................................. 5 List of tables............................................................................................................................................. 8 List of acronyms/abbreviations ................................................................................................................ 8 Glossary of terms .................................................................................................................................. 10 1. Introduction ........................................................................................................................................ 12 1.1 Background and objectives ......................................................................................................... 12 1.2 Approach and methods ............................................................................................................... 12 1.3 Structure of the report ................................................................................................................. 14 1.4 Scope and limitations .................................................................................................................. 14 2. Ethics, law and enhancing the legal frameworks – introductory clarifications .................................. 15 3. Enhancing the legal frameworks for human genetics and genomics ................................................ 20 3.1. Introduction................................................................................................................................. 20 3.1.1 Background and purpose ...................................................................................................... 20 3.1.2 Approach and delimitations ................................................................................................... 20 3.2 Principles that steer potential changes ....................................................................................... 21 3.3 International level changes ......................................................................................................... 23 3.4 EU level changes ........................................................................................................................ 27 3.5 National level changes ................................................................................................................ 31 3.6 Conclusions ..................................................................................................................................... 33 4. Enhancing the legal frameworks for human enhancement technologies .......................................... 34 4.1. Introduction................................................................................................................................. 34 4.1.1 Scope and limitations ............................................................................................................ 35 4.1.2 Challenges in improving the legal frameworks for HET ........................................................ 36 4.2. Potential changes and recommendations .................................................................................. 37 4.2.1 Health and safety .................................................................................................................. 38 4.2.2 Privacy and data protection ................................................................................................... 43 4.2.3 Autonomy .............................................................................................................................. 46 4.2.4 Equality .................................................................................................................................. 47 4.2.5 Technology assessment ....................................................................................................... 48 4.2.6 Conclusions .............................................................................................................................. 49 5. Enhancing the legal frameworks for AI and robotics ......................................................................... 57 5.1. Introduction................................................................................................................................. 57 3 741716 – SIENNA – D5.6 Deliverable report 5.2. International level changes ........................................................................................................ 58 5.3. EU-level changes ....................................................................................................................... 63 5.4. National level changes ............................................................................................................... 71 5.5 Conclusions ................................................................................................................................. 75 6. Conclusions ....................................................................................................................................... 77 References ............................................................................................................................................ 81 Books, articles and other references................................................................................................. 81 Legislative texts and documents ....................................................................................................... 88 European Union ............................................................................................................................