title: Rendered invisible? The absent presence of egg providers in U.K. debates on the acceptability of research and therapy for mitochondrial disease.
abstract: Techniques for resolving some types of inherited mitochondrial diseases have recently been the subject of scientific research, ethical scrutiny, media coverage and regulatory initiatives in the UK. Building on research using eggs from a variety of providers, scientists hope to eradicate maternally transmitted mutations in mitochondrial DNA by transferring the nuclear DNA of a fertilised egg, created by an intending mother at risk of transmitting mitochondrial disease, and her male partner, into an enucleated egg provided by another woman. In this article we examine how egg providers for mitochondrial research and therapy have been represented in stakeholder debates. A systematic review of key documents and parliamentary debates shows that the balance of consideration tilts heavily towards therapeutic egg providers; research egg providers have been ignored and rendered invisible. However, mapping the various designations of therapeutic egg providers shows that their role is so heavily camouflaged that they have only an absent presence in discussions. We explore this puzzling ambivalence towards egg providers whose contributions are necessary to the success of current mitochondrial research and proposed therapies. We suggest that labels that diminish the contributions of egg providers serve certain governance objectives in managing possible future claims about, and by, therapeutic egg providers. We demonstrate that the social positioning of research egg providers is entangled within that of therapeutic egg providers which means that the former can also never receive their due recognition. This article contributes to the wider literature on the governance of new technological interventions.
authors.affiliation: Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, 4th Floor Claremont Bridge, Claremont Road, Newcastle upon Tyne, NE1 7RU, UK. erica.haimes@ncl.ac.uk.
authors.forename: Erica
authors.initials: E
authors.lastname: Haimes
authors.affiliation: Policy, Ethics and Life Sciences (PEALS) Research Centre, Newcastle University, 4th Floor Claremont Bridge, Claremont Road, Newcastle upon Tyne, NE1 7RU, UK. kenneth.taylor@ncl.ac.uk.
authors.forename: Ken
authors.initials: K
authors.lastname: Taylor
mesh_terms: D018070:Biological Specimen Banks / Q000941:ethics*; D004272:DNA, Mitochondrial / Q000235:genetics*; D004739:England; D004992:Ethics, Medical; D032984:Ethics, Research; D015316:Genetic Therapy / Q000941:ethics*; D006801:Humans; D028361:Mitochondrial Diseases / Q000628:therapy*; D053652:Nuclear Transfer Techniques / Q000941:ethics*; D027724:Reproductive Techniques, Assisted / Q000941:ethics*; D014019:Tissue Donors / Q000941:ethics*
chemical_list: D004272:DNA, Mitochondrial
keywords: Egg donors; Germline alteration; Mitochondria; Three genome embryo; UK legislation