Toggle Main Menu Toggle Search

Open Access padlockePrints

Reinterpreting “genetic identity” in the regulatory and ethical context of heritable genome editing

Lookup NU author(s): Ying-Qi Liaw, Dr Ilke TurkmendagORCiD, Professor Kathryn Hollingsworth

Downloads


Licence

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


Abstract

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.


Publication metadata

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


Altmetrics

Altmetrics provided by Altmetric


Share