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What Would It Take to Enable Germline Editing in Europe for Medical Purposes?
Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Law, Department of Law.ORCID iD: 0000-0002-5621-8485
2023 (English)In: Governing, Protecting, and Regulating the Future of Genome Editing: The Significance of ELSPI Perspectives / [ed] Santa Slokenberga; Timo Minssen; Ana Nordberg, Leiden; Boston: Brill Nijhoff, 2023, p. 200-221Chapter in book (Refereed)
Abstract [en]

Commonly, the regulation on germline editing in Europe is described through the two prohibitions: the prohibition set out in Article 13 of the Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine and the prohibition that is set out in the EU Clinical Trials Regulation. These prohibitions reflect the European regional position regarding the ethical and legal questions raised by the technology, and an unwillingness to enable such interventions in Europe. Simultaneously, these prohibitions have been shaped prior to the recent breakthroughs in the field, such as the discovery of the CRISPR-Cas technology, which has initiated a new era in the field. This contribution examines what it would take to enable human germline gene editing in Europe for medical purposes. It scrutinises in detail the content and context of the existing bans, as well as mechanisms to lift them. It argues that the bans that are prescribed by each of the European regional legal orders are embedded in strong structures, composed of values and principles. For the human germline gene editing to be enabled in Europe for health-related purposes, the approach to these values and principles needs to change. Only then can the machinery to lift the bans lead to a change.

Place, publisher, year, edition, pages
Leiden; Boston: Brill Nijhoff, 2023. p. 200-221
Keywords [en]
Biomedicine Convention Article 13, Clinical Trials Regulation Article 90, gene therapy, germline gene editing
National Category
Law Medical Ethics
Research subject
Medical Law
Identifiers
URN: urn:nbn:se:uu:diva-511985DOI: 10.1163/9789004526136_011ISBN: 978-90-04-52613-6 (electronic)ISBN: 978-90-04-52608-2 (print)OAI: oai:DiVA.org:uu-511985DiVA, id: diva2:1798380
Available from: 2023-09-19 Created: 2023-09-19 Last updated: 2023-09-25Bibliographically approved

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Slokenberga, Santa

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CiteExportLink to record
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Citation style
  • apa
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Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
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More languages
Output format
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