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Lookup NU author(s): Ying-Qi Liaw, Dr Ilke TurkmendagORCiD, Professor Kathryn HollingsworthORCiD
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).
Heritable genome editing (HGE) involves germline modification, which is prohibited by several international conventions in order to protect “genetic identity”. This article provides a conceptual analysis of the concept of “genetic identity” and offers normative reflections as to how it should be interpreted in the context of HGE. Particularly, this article examines the purported right to retain “genetic identity” and the right-to-know “genetic identity” to explore the possible implications of these understandings on the debate concerning HGE on nuclear genome. The arguments of this article are twofold. Firstly, it argues that a right to retain “genetic identity”, that is a right to have untampered genome, is unlikely to be plausibly established following the current international provisions as a ground to determine the ethical acceptability of HGE. The article points out that the intention behind the international provisions to “protect the human genome” is to protect human (species) identity. Secondly, it argues that the right-to-know “genetic identity” based on a narrative-based understanding of identity should be given more weight in the context of HGE because it better safeguards the interests of the children born via the technology, should the technology be legalized for clinical use.
Author(s): Liaw Y-Q, Turkmendag I, Hollingsworth K
Publication type: Article
Publication status: Published
Journal: New Genetics and Society
Year: 2021
Volume: 40
Issue: 4
Pages: 406-424
Online publication date: 15/06/2021
Acceptance date: 19/05/2021
Date deposited: 20/05/2021
ISSN (print): 1463-6778
ISSN (electronic): 1469-9915
Publisher: Routledge
URL: https://doi.org/10.1080/14636778.2021.1941829
DOI: 10.1080/14636778.2021.1941829
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