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.

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.

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.

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.

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.

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.

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.

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.

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.

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 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.

"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.

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.

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.

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.

What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations.

This article seeks to establish that the social sciences have an important contribution to make to the study of ethics. The discussion is framed around three questions: (i) what theoretical work can the social sciences contribute to the understanding of ethics? (ii) what empirical work can the social sciences contribute to the understanding of ethics? And (iii) how does this theoretical and empirical work combine, to enhance the understanding of ethics, as a field of analysis and debate, is socially constituted and situated? Through these questions the argument goes beyond the now commonly cited objection to the over-simplistic division between normative and descriptive ethics (that assigns the social sciences the 'handmaiden' role of simply providing the 'facts'). In extending this argument, this article seeks to establish, more firmly and in more detail, that: (a) the social sciences have a longstanding theoretical interest analysing the role that a concern with ethics plays in explanations of social change, social organisation and social action; (b) the explanations that are based on the empirical investigations conducted by social scientists exemplify the interplay of epistemological and methodological analyses so that our understanding of particular substantive issues is extended beyond the conventional questions raised by ethicists, and (c) through this combination of theoretical and empirical work, social scientists go beyond the specific ethical questions of particular practices to enquire further into the social processes that lie behind the very designation of certain matters as being 'ethical issues.

Time waits for no one': IVF patients' evaluations of their experiences of the National Health Service waiting list.

This study investigated patients' evaluations of the costs and benefits of in vitro fertilization funded by the National Health Service, which is characterized by long waiting lists, a restricted number of treatment cycles and reduced chances of success. This paper reports the waiting list data. This was a prospective in-depth cohort study of 21 couples from one clinic, plus a comparison group of 99 couples, to establish the representativeness of the cohort couples.

Gamete and embryo donation: ethical implications for families.

This paper considers the ethical implications of gamete and embryo donation for both donating and receiving families. It suggests that the key ethical issue for receiving families is whether to tell the child about the means of conception. The ethical debate on this topic gains much from reviewing the research evidence of what parents actually do and the reasons they give for their actions.