The changing National Health Service: market-based reform and morality Comment on “Morality and Markets in the NHS”

This commentary explores some of the issues raised by Gilbert et al. short communication, Morality and Markets in the NHS . The increasing role of market mechanisms and the changing types of healthcare providers together with the use of choice and competition to drive improvements in quality in the National Health Service (NHS), all have important ethical implications. In order for the NHS to continue providing the level of service quality that out performs many high-income countries, despite spending much less on healthcare, we need a re-think of creeping marketization and privatisation and a consolidation of the NHS as a publically owned resource run for the benefit of patients and the public, not commercial interest

Family building using embryo adoption: relationships and contact arrangements between provider and recipient families — a mixed-methods study

STUDY QUESTION What contact arrangements are established between providers and recipients of embryos using Snowflakes® Embryo Adoption Program? SUMMARY ANSWER Contact arrangements varied considerably and were generally positively described, although some challenges were acknowledged. WHAT IS KNOWN ALREADY Reproductive technologies create new and diverse family forms, and the ways in which families created by embryo adoption are negotiated in practice have not been extensively investigated. STUDY DESIGN, SIZE, DURATION This exploratory, mixed-methods study had two phases: (i) an online survey (open May-September 2013) and (ii) qualitative semi-structured interviews by email (conducted between 2014 and 2015), exploring participants’ experiences of contact with their embryo provider or recipient. PARTICIPANTS/MATERIALS, SETTING, METHODS Phase I included 17 providers (14 women and 3 men) and 28 recipients (27 women and 1 man). Phase II included 8 providers (5 women and 3 men) and 12 recipients (10 women and 2 men). All participants, except one, were located in the US. MAIN RESULTS AND THE ROLE OF CHANCE This study illustrates how embryo adoption in the US, as a form of conditional donation, can operate and how the participants define and negotiate these emerging relationships. All families were open with their children about how they were conceived and early contact between recipients and providers (frequently before birth) was valued. On the whole, participants were happy with the amount and type of contact they had, and where the current contact did not involve the children, it was seen as a way of keeping the channels open for future contact when the children were older. Participants often portrayed the opportunities for contact as being in the best interests of the child. LIMITATIONS, REASONS FOR CAUTION The study participants are a particular group who had chosen to either receive or give their embryos via a conditional embryo adoption agency in the US and had established contact. Therefore, this is not a representative sample of those who provide or receive embryos for family building. WIDER IMPLICATIONS OF THE FINDINGS This embryo adoption model clearly fulfils a need; some people want to use a conditional embryo donation programme such as Snowflakes®. Some form of ‘ongoing support mechanism’ such as counselling could be useful for those negotiating the complex sets of new kinship patterns and balancing these relationships with their children's welfare. STUDY FUNDING/COMPETING INTEREST(S) The authors have no conflict of interest to declare. Snowflakes is a commercial adoption agency and the authors have no relation to the organization, other than requesting that they participate in this research project. TRIAL REGISTRATION NUMBER N/A

Ethics in the infertility clinic: a qualitative study

This thesis is a qualitative study of infertility clinicians in the UK, exploring how they manage ethical issues: a study that uses empirical methods to explore ethical questions. I use a broadly Aristotelian conception of the relationship between theory and practice to develop a methodology for considering practical ethical issues. I then show how this approach, when allied with contemporary qualitative methodologies, can provide particularly valuable insights and produce practical recommendations. An important element of my approach is that a close attention to actual practice can also result in refining and developing our ethical theories and principles – practice informs theory just as theory can inform practice. This account of the ethical decision-making processes of infertility clinicians can not only highlight new ethical problems, but also develop more nuanced moral norms and ethical theories to deal with the conflicts and issues that arise in the clinical setting. Infertility treatment is a speciality that has attracted much attention from the public and bioethicists. The focus has been predominately on the dramatic aspects such as the status of the embryo or underlying issues such as the ethical boundaries of procreative liberty. Relatively little, however, is known about the everyday moral workings of infertility clinics: how clinicians approach ethical issues on a daily basis; what for them are troubling issues; and how they resolve ethical conflict. This study aims to gain insight into the way clinicians actually make ethical decisions. Moving on from this, it critically evaluates such processes and offers both an analysis of the strengths and weaknesses of the clinicians’ ethical decision-making and considers how this form of decision-making can be extended and supported in practice. The aims of this thesis are to contribute to the debate on both how ethical decision-making in the infertility clinic can be improved and, more generally, how bioethics can make a useful contribute to practical problems

How experience makes a difference: practitioners' views on the use of deferred consent in paediatric and neonatal emergency care trials

BACKGROUND: In 2008 UK legislation was amended to enable the use of deferred consent for paediatric emergency care (EC) trials in recognition of the practical and ethical difficulties of obtaining prospective consent in an emergency situation. However, ambiguity about how to make deferred consent acceptable to parents, children and practitioners remains. In particular, little is known about practitioners’ views and experiences of seeking deferred consent in this setting. METHODS: As part of a wider study investigating consent methods in paediatric emergency care trials (called CONNECT), a 20 item online questionnaire was sent by email inviting practitioners (doctors and nurses) who were involved in talking with families about children’s and young people’s (aged 0–16 years) participation in UK EC trials. To ensure those with and without experience of deferred consent were included, practitioners were sampled using a combination of purposive and snowball sampling methods. Simple descriptive statistics were used to analyse the quantitative data, whilst the constant comparative method was used to analyse qualitative data. Elements of a symbiotic empirical ethics approach was used to integrate empirical evidence and bioethical literature to explore the data and draw practice orientated conclusions. RESULTS: Views on deferred consent differed depending upon whether or not practitioners were experienced in this consent method. Practitioners who had no experience of deferred consent reported negative perceptions of this consent method; these practitioners were concerned about the impact that deferred consent would have upon the parent-practitioner relationship. In contrast, practitioners experienced in deferred consent described how families had been receptive to the consent method, if conducted sensitively and in a time appropriate manner. Experienced practitioners also described how deferred consent had improved recruitment, parental decision-making capacity and parent-practitioner relationships in the emergency care setting. CONCLUSIONS: The views of practitioners with first-hand experience of deferred consent should be considered in the design and ethical review of future paediatric EC trials; the design and ethical review of such trials should not solely be informed by the beliefs of those without experience of using deferred consent. Further research involving parents and children is required to inform practitioner training and normative guidance on the use and appropriateness of deferred consent in emergency settings

Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting

Objective As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. Methods and results These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18–30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. Conclusions This discordance suggests a ‘generational shift’ and we advance a model of ‘relative solidarity’ among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend

Women, Midwives, and a Medical Model of Maternity Care in Switzerland

This paper presents a case study on the organisation of maternity healthcare in Switzerland, which has a costly healthcare system with high intervention rates within an obstetric-led maternity care model. Evidence has shown that midwifery care is associated with lower cost, higher satisfaction rates amongst women and less intervention. However, in the current model, midwives are both marginalised and underutilised. The paper focusses on the distribution of power and knowledge between midwives, women and the medical model. The varying power structures that shape the maternity care system in Switzerland are examined, using a case study approach that draws on Foucault’s concepts of the gaze, surveillance, disciplinary power, and the docile body. This paper will critically analyses the model of maternity care received by women in Switzerland and how it negatively impacts on both women’s personal and midwives’ professional autonomy whilst simultaneously driving up costs. A better understanding of the underlying power structures operating within the maternity care system may facilitate the implementation of more midwifery led care currently being endorsed by the Swiss Midwifery Association and some government agencies. This could result in reduced cost and lower intervention rates

‘This neo- natal ménage à trois’: British media framing of transnational surrogacy

Background: Media framing can influence people’s perceptions of social changes in family building, and has the potential to influence their future actions. Objectives: to analyse the type of framing and construction used in British news print of transnational commercial surrogacy. Methods: UK newspapers were searched using the search engine Lexis-Nexis. One hundred ninety seven articles were analysed. Content analysis was undertaken to identify the use of gain, loss, neutral, alarm and vulnerability frames, as well as type of construction (i.e. ethical, social, legal, financial and medical). Four researchers independently analysed articles using a coding strategy. Results: Differences between serious (mainly legal, financial), middle market (legal) and tabloid (social, financial) newspapers were found. There were three main foci; buying babies - affordable only to those wealthy enough to pay for it; the legal complications of transnational surrogacy - reporting a sense of the legal system lagging behind this practice; and gay families - repeatedly questioning their suitability as parents - demonstrating a prevailing heterosexual stereotype about reproduction and parenting. Conclusions: Stereotyping was prevalent and the welfare of children and medical aspects of transnational surrogacy were minimally addressed, indicating the media selectively influences its readership

Gamete donors' reasons for, and expectations and experiences of, registration with a voluntary donor linking register

This paper reports on a study of the views and experiences of 21 sperm donors and five egg donors registered with UK DonorLink (UKDL), a voluntary DNA-based contact register. Specifically, the paper examines donors’ reasons for searching for, or making information about themselves available to donor-conceived offspring. Their expectations of registration with UKDL, experiences of being registered and finally, the experiences of those who had made contact with donor-conceived offspring and other genetic relatives are investigated. While most respondents reported largely positive experiences of registration, the study found significant issues relating to concerns about donation, about DNA testing, possible linking with offspring and expectations of any relationship that might be established with offspring that have implications for support, mediation and counselling. Research that puts the experiences, perceptions and interests of gamete donors as the central focus of study is a relatively recent phenomenon. This study contributes to this research and highlights directions for future research in this area