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ORIGINAL RESEARCH article

Front. Genome Ed.
Sec. Genome Editing in Human Health and Disease
Volume 6 - 2024 | doi: 10.3389/fgeed.2024.1426228
This article is part of the Research Topic Ethics of Genome Editing View all articles

Beyond the Traditional Distinctions of Genome Editing: Evaluating a Vulnerability Framework

Provisionally accepted
  • 1 Second Department of Surgery, Aretaieion Hospital, Medical School of Athens, National and Kapodistrian University of Athens, Athens, Greece
  • 2 Faculty of Philosophy, University of Bucharest, Bucharest, Romania
  • 3 Institute for Research on Population and Social Policies (IRPPS-CNR), Rome, Italy
  • 4 Department of Immunology and Oncology, Centro Nacional de Biotecnología, Consejo Superior de Investigaciones Científicas, Madrid, Spain
  • 5 Faculty of Science and Engineering, University of Groningen, Groningen, Netherlands
  • 6 Department of Biology, National and Kapodistrian University of Athens (NKUA), Athens, Greece
  • 7 Department of History and Theory of Law, School of Law, National and Kapodistrian University of Athens, Athens, Greece
  • 8 Medical School of Athens, National and Kapodistrian University of Athens (NKUA), Athens, Greece
  • 9 Department of Biochemistry and Molecular Biology, Biophysics Group, Universidad Complutense de Madrid,, Madrid, Spain
  • 10 Institute for Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany
  • 11 Research Unit ‘Ethics of Genome Editing’, Institute of Ethics and History of Medicine, University of Tübingen, Tübingen, Germany

The final, formatted version of the article will be published soon.

    Over forty years ago, the 1982 Splicing Life report outlined the two distinctions that have orientated much of the normative and legal landscape of genetic intervention or genome editing since -that of somatic versus germline (or heritable interventions) and medical versus non-medical (or enhancement) applications. During this time, these distinctions have been used to ethically prioritize some areas of research and potential application, such as somatic treatments, while considering others for prohibition, such as germline enhancements.Nevertheless, somatic interventions may also be done for controversial enhancement purposes while some germline interventions may be done with greater prima facie justification (e.g. the enhancement of athletic ability versus the avoidance of Tay-Sachs disease). Even with new somatic treatments that are generally lauded, exemplified with the case of Casgevy, many issues still arise -such as cost and access, particularly salient on a global level. The concerns over a dystopian future of genetic haves and have nots, as a result of enhancement and/or germline interventions, that perhaps may happen, should not distract us from a greater attention to what is happening in the here and now. In this paper, we will highlight the limits of the two distinctions in terms of moving from questions of "should a technology be used" to "how should a technology be used". We argue that an additional focus on vulnerability and marginalization can be useful to support the attempt to better prioritize which interventions should be permitted or prohibited. We show how this can better dovetail with calls for effective (global) governance and reasonable consensus by focusing on the most urgent issues and developing policy accordingly, while leaving aside more abstract issues for further discussion.

    Keywords: Genome editing, CRISPR, Ethics, regulation, Vulnerability

    Received: 30 Apr 2024; Accepted: 20 Sep 2024.

    Copyright: © 2024 Angelioudaki, Badea, Bodo, Fernández-Soto, Karyampa, Kokkinakis, Kolisis, Kominea, Ozáez Armijos, Vogel and Feeney. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Oliver Feeney, Research Unit ‘Ethics of Genome Editing’, Institute of Ethics and History of Medicine, University of Tübingen, Tübingen, Germany

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