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Portrait of Ana Nordberg. Photo.

Ana Nordberg

Senior lecturer

Portrait of Ana Nordberg. Photo.

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

Editor

  • Santa Slokenberga
  • Timo Minssen
  • Ana Nordberg

Summary, in English

This book 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 book is an outcome of the Nordic Permed Law Symposium on Human Genome Editing, held online on November 3-4, 2021, and is expected to be published open access, latest September 2022.

Department/s

  • Human Rights Law
  • Health Law
  • Department of Law

Publishing year

2023-03-09

Language

English

Document type

Book

Publisher

Brill Nijhoff

Topic

  • Law

Keywords

  • Human rights
  • Social welfare law
  • Medical law
  • Genome editing governance
  • Mänskliga rättigheter
  • Socialrätt

Status

Published

Research group

  • Human Rights Law
  • Health Law

ISBN/ISSN/Other

  • ISBN: 978-90-04-52613-6
  • ISBN: 978-90-04-52608-2