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  • Governing, Protecting, and Regulating the Future of Genome Editing: The Significance of ELSPI Perspectives

It is our great pleasure to share that the Nordic Permed Law special issue on Ethical, Legal, Social, and Policy Perspectives in Genome Editing hosted by the European Journal of Health Law and co-edited by Santa Slokenberga, Ana Nordberg, and Timo Minssen is finally out!

The special issue brings together several outstanding authors in the field and covers questions relating to the fundamental milestones in technology development and governance (Judit Sandor), an analysis of disability questions and empowerment of the community (Pin Lean Lau), right to health opportunities and challenges (Anne Kjersti Befring), the protection of the right to private life and life (Merel M. Spaander), and preconditions for the use of technology for heritable changes in the human genome (Noemi Conditi), and the intersection of genome editing and artificial intelligence (Anastasiya Kiseleva).

It also examines the rules relating to the early access of gene therapy medicinal products (Vera Lucia Raposo) and the adequacy of the rules on safety and application of the technology in healthcare within the EU (Michal Koščík and Eliška Vladíková).

Moreover, it looks into the availability and accessibility of the technology. The special issue examines the values behind the prohibitions of germline interventions in Europe and explores the feasibility of lifting these bans (Santa Slokenberga, gold OA); it looks at the social justice in the field and the need to ensure better access to biotechnological innovations (Oliver Feeney) as well as examines the morality clauses in patent legislation and their impact on the technology governance (Duncan Matthews, Timo Minssen and Ana Nordberg).

At times, even the best technology governance tools fail in ensuring adequate access to the technology and the market actors risk behaving in a way that could undermine the right to health. Here, competition law perspectives come into play and offer tools for ensuring a minimum level of competition in the field (Vladimir Bastidas Venegas, gold OA).

The special issue is an outcome of the Nordic Permed Law Symposium on Human Genome Editing, held online on November 3-4. We thank the audience and participants, as well as the discussants, in particular, Senior Lecturer Andelka Phillips, University of Waikato, Professor Jessica Almqvist, Lund University, as well as Researcher Emilia Niemiec, Lund University for the fruitful discussions and enrichment of the authors’ work.

Introduction of the special issue that aims to provide an overview of the field and give a greater insight into the various contributions of the issue is published open access.

Take a look and enjoy!