The making of a moral economy: women's views of monetary transactions in an 'egg sharing for research' scheme.

There are growing debates about the appropriateness of offering money in exchange for the provision of bodily materials for clinical treatment and research. The bioethics literature and many practice guidelines have generally been opposed to such entanglement, depicting the use of money as contaminating, creating undue inducement, exploitation and commodification of the human body. However, two elements have been missing from these debates: (i) the perspectives of those people providing bodily materials when money is offered; and (ii) systematic empirical engagement with the notion of 'money' itself. This article seeks to fill those gaps in knowledge by providing detailed insights from a project investigating the views and experiences of women who volunteered to provide eggs for research in exchange for reduced fees for fertility treatment. Analysis of 29 semi-structured interviews reveals multiple ways in which volunteers reason through the involvement of 'money' in this domain and shows how their accounts diverge from pessimistic understandings of the role of monies in everyday life. When volunteers speak in detail about the monetary aspects of their participation they draw major, recurring, distinctions in five overlapping areas: their depiction of the monetized world of fertility treatment; their views of the different forms that money can take; a distancing of their actions from their understandings of how markets and commodities work; their location of the transactions within a particular clinic, and the ongoing importance of their eggs, post-transaction. This article: (i) responds to calls for concrete case studies to assist understandings of the inter-relationships of money and specific aspects of social life; (ii) adds to the sociology of money literature by providing empirical insights into how notions of money are deployed; (iii) presents much-needed perspectives from providers of bodily materials; and (iv) contributes to ongoing conversations between bioethics and sociology.

Sharpening the cutting edge: additional considerations for the UK debates on embryonic interventions for mitochondrial diseases.

In October 2015 the UK enacted legislation to permit the clinical use of two cutting edge germline-altering, IVF-based embryonic techniques: pronuclear transfer and maternal spindle transfer (PNT and MST). The aim is to use these techniques to prevent the maternal transmission of serious mitochondrial diseases. Major claims have been made about the quality of the debates that preceded this legislation and the significance of those debates for UK decision-making on other biotechnologies, as well as for other countries considering similar legislation. In this article we conduct a systematic analysis of those UK debates and suggest that claims about their quality are over-stated. We identify, and analyse in detail, ten areas where greater clarity, depth and nuance would have produced sharper understandings of the contributions, limitations and wider social impacts of these mitochondrial interventions. We explore the implications of these additional considerations for (i) the protection of all parties involved, should the techniques transfer to clinical applications; (ii) the legitimacy of focussing on short-term gains for individuals over public health considerations, and (iii) the maintenance and improvement of public trust in medical biotechnologies. We conclude that a more measured evaluation of the content and quality of the UK debates is important and timely: such a critique provides a clearer understanding of the possible, but specific, contributions of these interventions, both in the UK and elsewhere; also, these additional insights can now inform the emerging processes of implementation, regulation and practice of mitochondrial interventions.

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

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.

To freeze or not to freeze embryos: clarity, confusion and conflict.

Although embryo freezing is a routine clinical practice, there is little contemporary evidence on how couples make the decision to freeze their surplus embryos, or of their perceptions during that time. This article describes a qualitative study of 16 couples who have had in vitro fertilisation (IVF) treatment. The study question was 'What are the personal and social factors that patients consider when deciding whether to freeze embryos?' We show that while the desire for a baby is the dominant drive, couples' views revealed more nuanced and complex considerations in the decision-making process. It was clear that the desire to have a baby influenced couples' decision-making and that they saw freezing as 'part of the process'. However, there were confusions associated with the term 'freezing' related to concerns about the safety of the procedure. Despite being given written information, couples were confused about the practical aspects of embryo freezing, which suggests they were preoccupied with the immediate demands of IVF. Couples expressed ethical conflicts about freezing 'babies'. We hope the findings from this study will inform clinicians and assist them in providing support to couples confronted with this difficult decision-making.

What is the role of reduced IVF fees in persuading women to volunteer to provide eggs for research? Insights from IVF patients volunteering to a UK 'egg sharing for research' scheme.

This article reports selected findings from a project investigating the question: 'Does volunteering for the 'Newcastle egg sharing for research scheme', in which IVF patients receive reduced fees when providing 50% of their eggs, entail any social and ethical costs?' The focus is on women's views of the role of the reduced fees in persuading them to volunteer. The study fills a gap in knowledge, as there have been no previous investigations of women's experiences of providing eggs for research under such circumstances. This was an interview-based study, designed to gain understanding of the volunteers' perspectives. The main findings are that the interviewees' primary goal is to have a baby; they volunteered to provide eggs for research in order to access cheaper treatment in a context where private IVF fees are high, there is insufficient state funding, and providing eggs for other couples' treatment was deemed unacceptable. Interviewees welcomed the scheme, but were not volunteering entirely under circumstances of their choosing; they would prefer not to provide eggs during their own IVF treatment and under certain circumstances change their minds about so doing. In conclusion, reduced fees, although an important factor, do not act as an undue inducement in persuading volunteers to act against their own interests.

Juggling on a rollercoaster? Gains, loss and uncertainties in IVF patients' accounts of volunteering for a U.K. 'egg sharing for research' scheme.

The past decade has seen a growth in demand for human eggs for stem cell related research and, more recently, for mitochondrial research. That demand has been accompanied by global debates over whether women should be encouraged, by offers of payments, in cash or kind, to provide eggs. Few of these debates have been informed by empirical evidence, let alone by the views of women themselves. This article addresses that gap in knowledge by presenting findings from a UK investigation, conducted 2008-2011, which is the first systematic study of women volunteering to provide eggs under such circumstances. This article focuses on the views and experiences of 25 IVF patients who volunteered for the Newcastle 'egg sharing for research' scheme (NESR), in exchange for reduced IVF fees. This was an interview based study, designed to gain understandings of volunteers' perspectives and reasoning. The interviews show that volunteers approached the scheme as a way of accessing more treatment in pursuit of their goal of having a baby, against a landscape of inadequate state provision of treatment and expensive private treatment. The process of deciding to volunteer raised a wide range of uncertainties about the consequent gains and losses, for women already in the uncertain world of the 'IVF rollercoaster'. However, interviewees preferred to have the option of the NESR, than not, and they juggled the numerous uncertainties with skill and resilience. The article is as revealing of the ongoing challenges of the UK IVF bio-economy as it is of egg provision. This article adds to the growing body of knowledge of the contributions of tissue providers to the global bio-economy. It also contributes to several areas of wider sociological interest, including debates on the social management of 'uncertainty' and discussions at the interface of sociology and ethics.

Position statement on the provision and procurement of human eggs for stem cell research.

The nature of compensation for women who donate eggs (oocytes) for research remains a contentious issue internationally. This position paper lays out the arguments for, and discusses the arrangements in which, a modest payment might be ethically justifiable.

Donating embryos to stem cell research.

This paper is based on linked qualitative studies of the donation of human embryos to stem cell research carried out in the United Kingdom, Switzerland, and China. All three studies used semi-structured interview protocols to allow an in-depth examination of donors' and non-donors' rationales for their donation decisions, with the aim of gaining information on contextual and other factors that play a role in donor decisions and identifying how these relate to factors that are more usually included in evaluations made by theoretical ethics. Our findings have implications for one factor that has previously been suggested as being of ethical concern: the role of gratitude. Our empirical work shows no evidence that interpersonal gratitude is an important factor, but it does support the existence of a solidarity-based desire to "give something back" to medical research. Thus, we use empirical data to expand and refine the conceptual basis of bioethically theorizing the IVF-stem cell interface.

Eggs, ethics and exploitation? Investigating women's experiences of an egg sharing scheme.

There is a growing global demand for human eggs for the treatment of sub-fertile women and for stem cell-related research. This demand provokes concerns for the women providing the eggs, including their possible exploitation, whether they should be paid, whether they can give properly informed consent and whether their eggs and bodies are becoming commodified. However, few of the debates have benefitted from insights from the women themselves. We address this gap in knowledge by reporting on a study investigating women's views and experiences of a scheme in which they can volunteer, in their capacity as fertility patients, to 'share' their eggs with researchers and receive a reduction in in vitro fertilisation fees. We focus our discussion on the question of exploitation, a concept central to many sociological and ethical interests. In brief, our analysis suggests that while interviewees acknowledge the potential of this scheme to be exploitative, they argue that this is not the case, emphasising their ability to act autonomously in deciding to volunteer. Nonetheless, these freely made decisions do not necessarily take place under circumstances of their choosing. We discuss the implications of this for egg provision in general and for understandings of exploitation.

Researching the relationships between tissue providers, clinicians, and stem cell scientists.

Access to human reproductive tissue is essential for many forms of stem cell research. We identify questions for future studies of tissue providers, procurers, and end-user scientists, and suggest that international comparative studies of all three parties, and of the relationships between them, will improve the ethical supply of tissue.

The contributions of empirical evidence to socio-ethical debates on fresh embryo donation for human embryonic stem cell research.

This article is a response to McLeod and Baylis (2007) who speculate on the dangers of requesting fresh 'spare' embryos from IVF patients for human embryonic stem cell (hESC) research, particularly when those embryos are good enough to be transferred back to the woman. They argue that these embryos should be frozen instead. We explore what is meant by 'spare' embryos. We then provide empirical evidence, from a study of embryo donation and of embryo donors' views, to substantiate some of their speculations about the problems associated with requesting fresh embryos. However, we also question whether such problems are resolved by embryo freezing, since further empirical evidence suggests that this raises other social and ethical problems for patients. There is little evidence that the request for embryos for research, in itself, causes patients distress. We suggest, however, that no requests for fresh embryos should be made in the first cycle of IVF treatment. Deferring the request to a later cycle ensures that potential donors are better informed (by experience and reflection) about the possible destinations of their embryos and about the definition of 'spare embryos'. Both this article, and that by McLeod and Baylis, emphasize the need to consider the views and experiences of embryo donors when evaluating the ethics of embryo donation for hESC research.

How reproductive and regenerative medicine meet in a Chinese fertility clinic. Interviews with women about the donation of embryos to stem cell research.

The social interface between reproductive medicine and embryonic stem cell research has been investigated in a pilot study at a large IVF clinic in central China. Methods included observation, interviews with hospital personnel, and five in-depth qualitative interviews with women who underwent IVF and who were asked for their consent to the donation of embryos for use in medical (in fact human embryonic stem cell) research. This paper reports, and discusses from an ethical perspective, the results of an analysis of these interviews. The participants talked of extreme social pressure to become pregnant. Once they had a baby, 'spare' embryos lost practical significance due to the Chinese one-child policy. In the context of decision making about donating embryos to research, the women used the clinical distinctions between 'good and bad quality' embryos and also between frozen and transferred embryos, as guiding moral distinctions. In the absence of concrete information about what sort of research their embryos should be used for, the women interviewed either refused consent (for fear that the embryo would be given to another couple) or accepted, expressing motives of solidarity with other women in a similar situation. This reveals that they filled the knowledge gap with an image of research improving fertility treatment.

"So, what is an embryo?" A comparative study of the views of those asked to donate embryos for hESC research in the UK and Switzerland.

The moral status of the human embryo has gained much attention in debates over the acceptability, or otherwise, of human embryonic stem cell research. Far less attention has been paid to the suppliers of those embryos: people who have undergone IVF treatment to produce embryos to assist them to have a baby. It is sociologically and ethically important to understand their views and experiences of being asked to donate embryos for research if we are to fully understand the wider social and regulatory aspects of hESC science. This paper reports on parallel studies investigating these issues in the UK and in Switzerland. The studies reveal the inextricable entangling of the social and moral status of embryos. Since donors participate in different discursive domains and contexts (public, clinic, family) that shape their perception of "what" an embryo is, their views of embryos embody conflicting ideas and ambivalences.

Sociology, ethics, and the priority of the particular: learning from a case study of genetic deliberations.

There are growing debates about the relationship between the two disciplines of sociology and ethics, particularly as they each become increasingly involved in research and policy formation on the life sciences, especially genetics. Much of this debate has been highly abstract, often stipulating the seemingly different character of the two disciplines and speculating on their theoretical potential--or lack thereof--for future collaborative work. This article uses an existing collaboration between a sociologist and an ethicist, on a study of participation in genetic databases, to explore some of the challenges, for both disciplines, of working together. Building upon this case study, we examine the suggestion that the Aristotelian concept of 'phronesis' provides the grounds for establishing one possible theoretical framework with which the disciplines can be bridged. Further exploration of this approach leads to suggestions for ways of thinking about the apparently fundamental divides between the disciplines and for ways of adding to notions of a 'public sociology'.

Studying potential donors' views on embryonic stem cell therapies and preimplantation genetic diagnosis.

Embryo experimentation raises many ethical questions, but is established as acceptable practice in the UK under the Human Fertilisation and Embryology Act 1990. The development of preimplantation genetic diagnosis (PGD) and embryonic stem (ES) cell research is dependent on couples undergoing in vitro fertilization (IVF) donating for research embryos that are unused in, or unsuitable for, treatment. Rarely is the role of these donors acknowledged, let alone studied. One concern is whether couples feel an obligation to donate embryos because of their gratitude for the IVF treatment they have received. This article, based on an ongoing study investigating the similarities and differences between the views and values of those IVF couples who agree to donate embryos for research and those who refuse to donate embryos, explores the broader issues around embryonic research. Discussions such as this, embedded in a background of empirical research, will assist practitioners and policymakers in assessing the social and ethical contexts of this very important aspect of current and future scientific developments.

When transgressions become transparent: limiting family forms in assisted conception.

This article explores the social processes through which ideas about the family become translated into regulation and practice in assisted conception. Drawing on social problems literature, it is suggested that claims are made (by regulators, practitioners and others) about the desirability of certain family types and that forms of regulation occur when families transgress, in particularly obvious ways, the boundaries of those definitions. The apparently disparate examples of lesbian access to donor insemination and donor anonymity are brought together to illustrate the argument. It is also suggested that much formal regulation and clinical practice is directed towards making such transgressions less transparent, thus protecting the practice of assisted conception from unwelcome scrutiny.