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Rendered invisible? The absent presence of egg providers in U.K. debates on the acceptability of research and therapy for mitochondrial disease

Lookup NU author(s): Emerita Professor Erica Haimes, Dr Kenneth Taylor

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


Abstract

Techniques for resolving some types of inherited mitochondrial diseaseshave recently been the subject of scientific research, ethical scrutiny, media coverageand regulatory initiatives in the UK. Building on research using eggs from avariety of providers, scientists hope to eradicate maternally transmitted mutations inmitochondrial DNA by transferring the nuclear DNA of a fertilised egg, created byan intending mother at risk of transmitting mitochondrial disease, and her malepartner, into an enucleated egg provided by another woman. In this article weexamine how egg providers for mitochondrial research and therapy have beenrepresented in stakeholder debates. A systematic review of key documents andparliamentary debates shows that the balance of consideration tilts heavily towardstherapeutic egg providers; research egg providers have been ignored and renderedinvisible. However, mapping the various designations of therapeutic egg providersshows that their role is so heavily camouflaged that they have only an absentpresence in discussions. We explore this puzzling ambivalence towards egg providerswhose contributions are necessary to the success of current mitochondrialresearch and proposed therapies. We suggest that labels that diminish the contributionsof egg providers serve certain governance objectives in managing possiblefuture claims about, and by, therapeutic egg providers. We demonstrate that thesocial positioning of research egg providers is entangled within that of therapeuticegg providers which means that the former can also never receive their duerecognition. This article contributes to the wider literature on the governance of new technological interventions.


Publication metadata

Author(s): Haimes E, Taylor K

Publication type: Article

Publication status: Published

Journal: Monash Bioethics Review

Year: 2015

Volume: 33

Issue: 4

Pages: 360-378

Print publication date: 01/12/2016

Online publication date: 30/12/2015

Acceptance date: 18/12/2015

Date deposited: 01/02/2016

ISSN (print): 1321-2753

ISSN (electronic): 1836-6716

Publisher: Springer

URL: http://dx.doi.org/10.1007/s40592-015-0046-7

DOI: 10.1007/s40592-015-0046-7

PubMed id: 26712608


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