Lookup NU author(s): Emerita Professor Erica Haimes,
Dr Kenneth Taylor
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
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.
Author(s): Haimes E, Taylor K
Publication type: Article
Publication status: Published
Journal: Monash Bioethics Review
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
PubMed id: 26712608
Altmetrics provided by Altmetric