Since mitochondrial replacement techniques were developed and clinically introduced in the United Kingdom, there has been much discussion of whether these lead to children borne of three parents. In the UK, the regulation of MRT has dealt with this by stipulating that egg donors for the purposes of MRT are not genetic parents even though they contribute mitochondrial DNA to offspring. In this paper, I examine the way that the Human Fertilisation and Embryology Act in the UK manages the question (...) of parentage. I argue that the Act breaks the link typically made between genetic causation and genetic parenthood by redefining genetic causation solely in terms of nuclear genetics. Along with this, mtDNA is construed as a kind of supplement to the nuclear family. Drawing on the account of the supplement developed by Jacques Derrida, I argue that mtDNA and the women who donate it are seen as both essential to establishing the nuclear family but also exterior to and insignificant for it. (shrink)

UK law permits parents to use mitochondrial replacement to have genetically-related children without serious mitochondrial disease. However, long-term follow-up is required for each case. Whet...

Several objections against the morality of researching or employing mitochondrial replacement techniques have been advanced recently. In this paper, I examine three of these objections and show that they are found wanting. First I examine whether mitochondrial replacement techniques, research and clinical practice, should not be carried out because of possible harms to egg donors. Next I assess whether mitochondrial replacement techniques should be banned because they could affect the study of genealogical ancestry. Finally, I examine the claim that mitochondrial (...) replacement techniques are not transferring mitochondrial DNA but nuclear DNA, and that this should be prohibited on ethical grounds. (shrink)

Some Comments on de Melo-Martin and Harris.

Children created through mitochondrial replacement techniques (MRTs) are commonly presented as possessing 50% of their mother’s nuclear DNA, 50% of their father’s nuclear DNA and the mitochondrial DNA of an egg donor. This lab-engineered genetic composition has prompted two questions: Do children who are the product of an MRT procedure have threegeneticparents? And, do MRT egg donors have parental responsibilities for the children created? In this paper, I address the second question and in doing so I also address the first (...) one. First, I present a brief account of mitochondrial diseases and MRTs. Second, I examine how MRTs affect the numerical identity of eggs and zygotes. Third, I investigate two genetic accounts of parenthood and MRT egg donation. Fourth, I explore three causal accounts of parenthood and MRT egg donation. My conclusion is that, under the appropriate circumstances, MRT egg donors are parentally responsible for the children created under genetic accounts of parenthood and under causal accounts of parenthood. (shrink)

This paper examines whether there are moral differences between the mitochondrial replacement techniques that have been recently developed in order to help women afflicted by mitochondrial DNA diseases to have genetically related children absent such conditions: maternal spindle transfer and pronuclear transfer. Firstly, it examines whether there is a moral difference between MST and PNT in terms of the divide between somatic interventions and germline interventions. Secondly, it considers whether PNT and MST are morally distinct under a therapy/creation optic. Finally, (...) it investigates whether there is a moral difference between MST and PNT from a human embryo destruction point of view. I conclude, contra recent arguments, that regarding the first two points there is no moral differences between PNT and MST; and that regarding the third one MST is morally preferable to PNT, but only if we hold a gradualist account of the moral value of human embryos where zygotes have slight moral value. (shrink)

The UK-based deliberations that led up to the legalisation of two new ‘mitochondrial donation’ techniques in 2015, and which continued after that time as regulatory details were determined, featured a division of advisory labour that is common when decisions are made about new technologies. An expert panel was convened by the Human Fertilisation and Embryology Authority, charged with assessing the scientific and technical aspects of these techniques. Meanwhile, the Nuffield Council on Bioethics addressed the ethical issues. While this division of (...) labour was undertaken in the name of thoroughness, I argue here that it can have the unintended consequence that hybrid questions that simultaneously involve ethical and technical aspects—especially questions about where to set evidential thresholds for the acceptance of new technology—do not receive enough attention. (shrink)

The advantages and risks of a number of new genome modifying procedures seeking to create healthy or enhanced individuals, such as Maternal Spindle Transfer, Pronuclear Transfer, Cytoplasmic Transfer and Genome Editing, are currently being assessed from an ethical perspective, by national and international policy organizations. One important aspect being examined concerns the effects of these procedures on different kinds of identity. In other words, whether or not a procedure only modifies the qualities or properties of an existing human being, meaning (...) that merely the qualitative identity of this single individual is affected, or whether a procedure results in the creation of a new individual, meaning that a numerically distinct human being would have come into existence. In this article, the different identity arguments proposed, so far, are presented with respect to these novel reproductive procedures. An alternative view is then developed using the Origin Essentialism argument to indicate that any change in the creative conditions of an individual such as in his or her biology but also the moment in time, and the three dimensions of space, will have a numerical identity effect and bring into existence a new individual who would not, otherwise, have existed. Because of this, it is concluded that a form of selection may have taken place in which a preference was expressed for one new possible individual instead of another, based on some frame of reference. This may then mean that a selection between persons has occured contravening the European Union Charter of Fundamental Rights which was ratified in 2000. (shrink)

Mitochondrial disease can be a devastating, degenerative illness, with limited treatment and no cure. Novel reproductive techniques involving mitochondria donation present an opportunity for women with mitochondrial disease to prevent the transmission of disease to her offspring. Current IVF techniques, such as pre-implantation genetic diagnosis, reduce but do not eliminate the risk for the child. However, knowledge of the contexts within which this disease is experienced and reproductive decisions are made is limited. This article draws on qualitative interviews with adult (...) patients to explore the practical realities of living with mitochondrial disease. Three key themes were identified; the personal and familial experiences of illness, age and generation as factors in shaping patient experience and the importance of experiential knowledge in making sense of reproductive choice. Overall, this article identifies potential barriers to patients accessing reproductive technologies highlighting how the complex nature and uncertain trajectory of mitochondrial disease poses considerable challenges for patients, practitioners and policy makers. (shrink)

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. (shrink)

Human heritable genome editing (HHGE) involves editing the genes of human gametes and/or early human embryos. Whilst ‘identity’ is a key concept underpinning the current HHGE debate, there is a lack of inclusive analysis on different concepts of ‘identity’ which renders the overall debate confusing at times. This paper first contributes to reviewing the existing literature by consolidating how ‘identity’ has been discussed in the HHGE debate. Essentially, the discussion will reveal an ontological and empirical understanding of identity when different (...) types of identity are involved. Here, I discuss genetic, numerical, qualitative and narrative and how each of them is relevant in the HHGE context. Secondly, given the different types of identity, the paper explores how we could navigate these different interpretations of identity in a way that promotes an inclusive and informed discussion between primary stakeholders and the general public in the HHGE debate. Here, I argue for and refine a multi-faceted concept of identity as a suitable framework for discussing the ethical and societal implications of HHGE because it not only could integrate different understandings of identity but also highlight the interconnectedness between these different understandings. (shrink)

Advances in medicine in the latter half of the twentieth century have dramatically altered human bodies, expanding choices around what we do with them and how they connect to other bodies. Nowhere is this more so than in the area of reproductive technologies. Reproductive medicine and the laws surrounding it in the UK have reconfigured traditional boundaries surrounding parenthood and the family. Yet culture and regulation surrounding RTs have combined to try to ensure that while traditional boundaries may be pushed, (...) they are reconstructed in similar ways. This paper looks at the most recent RT to be permitted in the UK, mitochondria replacement therapy. Despite controversial media headlines surrounding the technique, MRT is in fact an example of how science and regulation seek to expand models of traditional relatedness in a way that doesn’t challenge the existing order. Yet, like other RTs, while attempts are made to ensure it doesn’t push traditional boundaries too far, fissures and inconsistencies appear in law and culture, which give interesting insights into how genetics, parentage and identity are being mediated in new but familiar ways. (shrink)

This article addresses the child’s right to know their genetic origins in mitochondrial donation. It focuses on the UK’s public debate on mitochondrial replacement techniques and examines the claims-making activities that shaped the donor information regulations. During the public consultation, downplaying the significance of the mitochondria helped distinguish mitochondria donors from gamete donors and determine their relational status with the resulting child. As a result, according to the Mitochondrial Donation regulations, mitochondria donors, unlike gamete donors, will not be required to (...) be identifiable to the resulting child. I argue that, in the UK, similar to donor conception, public understanding of mitochondrial donation is shaped by a “calculus of genes”: simplified accounts of how genes determine the resulting child’s characteristics and identity. While the donor conception regulations ascribe social meaning to the passage of genes, the mitochondria regulations strip the social meaning away from the donation based on the assumption that the genetic contribution made by the donor is quantitatively insignificant in influencing the identity of the resultant offspring. The nature of the genetic material itself should not be considered as a privileged standpoint from which to decide on social meaning of the donation or the rights attached to it. (shrink)

Mitochondrial/nuclear transfer (M/NT) to avoid the transmission of serious mitochondrial disease raises complex and challenging ethical, legal and social issues (ELSI). In February 2015, the United Kingdom became the first country in the world to legalize M/NT, making the heated debate surrounding this technology even more relevant. This critical interpretive review identified 95 relevant papers discussing the ELSI of M/NT, including original research articles, government-commissioned reports, editorials, letters to editors and research news. The review presents and synthesizes the arguments present (...) in the literature in relation to the most commonly raised themes: terminology; identity, relationships and parenthood; potential harm; reproductive autonomy; available alternatives; consent; impact on specific interest groups; resources; “slippery slope”; creation, use and destruction of human embryos; and beneficence. The review concludes by identifying those ELSI that are specific to M/NT and by calling for follow-up longitudinal clinical and psychosocial research in order to equip future ELSI debate with empirical evidence. (shrink)