Laura Machin

A hierarchy of needs? Embryo donation, in vitro fertilisation and the provision of infertility counselling

Objective The aim of the paper is to examine how those working in, using and regulating assisted conception clinics discussed infertility counselling and its provision within the context of embryo donation and in vitro fertilisation. Method 35 participants were recruited for semi-structured, face-to-face interviews. All data were analysed using thematic analysis. Results The thematic analysis revealed recurring themes based upon the portrayals of infertility counselling, embryo donation and in vitro fertilisation. Conclusions This paper suggests that an implicit hierarchy exists around those using assisted conception techniques and their infertility counselling requirements, which was dependent upon the assisted conception technique used. As a result, some people using assisted conception techniques felt that their needs had been overlooked due to this covert hierarchy. Practice implications Those working in, using or regulating assisted conception clinics should not view infertility counselling as restricted to treatments involving donation, or solely for people within the clinical system.

Beyond the ‘embryo question’: human embryonic stem cell ethics in the context of biomaterial donation in the UK

Discussion about the ethics of human embryonic stem cell (ESC) research in the UK tends to be dominated by the divisive and potentially intractable issue of the moral status of the embryo. This can have the effect of silencing or marginalizing other concerns, especially in the context of public engagement with science in this field. One such area of potential public concern is the donation of oocytes and embryos to stem cell research. Contemporary research on the views of donors and potential donors about a wide range of biomaterials, from solid organs to gametes and bone marrow, is reviewed and used to illustrate the range and types of ethical concerns articulated by this important group of stakeholders. Attitudes to donation are found to vary according to the type of tissue being donated or collected, the purpose for which donation is being sought and the nature of the recipient of the donation. Pertinently, attitudes towards donating oocytes are found to differ in some respects from donation of embryos or fetal tissue. The implications of these findings for ensuring ethically robust informed consent and publicly acceptable sourcing of human biomaterials for stem cell research are then considered.

Are there implications for quality of care for patients who participate in international medical tourism

Expert Rev. Pharmacoeconomics Outcomes Res. 11(2), 133–136 (2011) “As with all medical treatments, an element of risk can exist to the patient’s health, which is mitigated and outweighed by the benefits resulting from the surgery. Medical tourism adds a new dynamic to this element of risk, owing to the overseas travel involved.” Medical tourism is now an established feature of the international healthcare landscape and is a burgeoning commercial industry attracting increasing numbers of people willing to fund their own treatment overseas. Although medical tourism spans the full spectrum of health services, most travel is restricted to a limited range of medical procedures, including cosmetic surgery, dental procedures, orthopedic surgery, cardiac surgery, fertility treatment, and organ and cellular transplantation [1,2].

How we tackled the problem of assessing humanities, social and behavioural sciences in medical education

Abstract Background: Assessment serves as an important motivation for learning. However, multiple choice and short answer question formats are often considered unsatisfactory for assessment of medical humanities, and the social and behavioural sciences. Little consensus exists as to what might constitute ‘best’ assessment practice. What we did: We designed an assessment format closely aligned to the curricular approach of problem-based learning which allows for greater assessment of students’ understanding, depth of knowledge and interpretation, rather than recall of rote learning. Conclusion: The educational impact of scenario-based assessment has been profound. Students reported changing their approach to PBL, independent learning and exam preparation by taking a less reductionist, more interpretative approach to the topics studied.

Mediated research encounters: methodological considerations in cross-language qualitative interviews

Given increasing globalisation, the continuing prevalence of emergencies, and the importance of rigorous research to ensure the mental health needs of populations exposed to emergencies are effectively met, cross-language research will continue to arise. Drawing upon the lead author’s experience of conducting a cross-language qualitative study in three post-conflict settings in South Asia, this article discusses methodological considerations raised when interviewing with interpreters. These include considering interpreter positionality and matching; the approach to cross-language mediation during interviews; and assessing the quality of interpreter facilitated interviews. Drawing upon approaches taken in this study, the important choices researchers face about how these are managed are examined, considering the roles of researcher and interpreter positionality, the research context, and the epistemological underpinnings of the research. The discussion further illuminates the interrelated methodological, practical and ethical considerations for other researchers embarking upon similar research.

Interprofessional spanning and building boundaries when supporting potential embryo donors to stem cell research

ABSTRACT When patients undergo fertility treatment, it is likely that a surplus of embryos will be created. The existence of these surplus embryos creates responsibilities for the clinics where they are stored and for the people who own them. Since 2001, the owners of the surplus embryos in the UK have the option to donate them to be used in stem cell research (SCR). This development has generated a new population—potential embryo donors to SCR—who have unique support needs as they are neither fertility patients nor donors. However, little is known how lay and professional stakeholders associated with fertility treatment and SCR have conceptualised the support needs of potential embryo donors to SCR or have responded to the additional task once the option became available. In this article, we draw on Gieryn’s concept of boundary-work to explore how the emergence of donating embryos to SCR has provided opportunities for embryologists, counsellors, and scientists to shift, adapt, or confirm their roles, knowledge base, and areas of expertise. We present a thematic analysis of 21 in-depth, semi-structured interviews conducted with UK lay and professional stakeholders associated with fertility treatment and SCR. We conclude with reflections on the implications this boundary-work has for those contemplating donating embryos to SCR and the care they receive when making their decision. Such insights are pertinent given the current policy and practice discussions led by the National Donation Strategy Group to improve the care of donors in the UK.

From waste product to blood, brains and narratives : developing a pluralist sociology of contributions to health research

Abstract The aim of this paper is to examine the meaning of the concept of donation in health research. Drawing on a set of narrative interviews with people invited to donate biosamples for research and a range of other studies, we identify several conceptual themes that speak to the complexity of the current landscape of critical thinking about donation. These conceptual themes are: the language of ‘donation’; a hierarchy of biosamples; alternative informational value; narratives as donation; coincidental donation, convenience and degree of invasiveness; and rights, consent and benefits of research participation. We call for a reconceptualisation of research donation to encompass not only the numerous types of sample readily classed as donations, but also other types of data and contributions, including narrative interviews, psychometric data, patient‐reported outcome measures, record‐linkage, and time and effort. We argue for the development of a pluralist sociology of research donations, and suggest that a ‘sociology of research contributions’ might better capture this complexity.

An alternative view of self-discharge against medical advice : an opportunity to demonstrate empathy, empowerment, and care

In this article, we present the experiences of discharging against medical advice from the perspectives of 17 hospital and community-based health care practitioners, and 16 patients, and relatives from a range of medical and surgical wards. Semistructured, in-depth interviews were conducted and thematically analyzed. We identified that practitioners, patients, and relatives frequently expressed empathy for each other during the interviews, and discharge against medical advice was presented as a way for patients to have control over their health. Contrary to predominantly negative framings that highlight increased mortality and morbidity, and portray people who discharge against medical advice as poor decision makers, we conclude discharge against medical advice can be framed positively. It can be an opportunity to empathize, empower, and care. We recommend that the vocabulary used in hospital discharge against medical advice policies and documents should be updated to reflect a culture of medicine that values patient autonomy, patient centeredness, and shared decision making.

Rethinking gamete donor care: A satisfaction survey of egg and sperm donors in the UK

Objective Despite poor clinic communication and staff treatment being reported by donors, high rates of overall satisfaction are still reported in surveys. This study will evaluate the importance of communication and interaction between donors and fertility clinic staff in gamete donor care. Methods We report on 120 egg and sperm donors’ responses to a UK-wide online satisfaction survey. The survey focused on donors’ interactions with fertility clinic staff pre-, during, and post- donation. Basic cross-tabulation was performed on the data using online survey software. Textual data was read and extracts identified, which illustrated and expanded on the findings from the numerical data. Diagrammatic modeling was also utilised to analyse the textual data, with particular focus to relationships between the donors and clinic staff, the main activities within the gamete donation process, and how these activities may affect donor satisfaction with the gamete donation process. Results Donors expressed concern for the infertile couple and the resulting child; conveyed frustration at not receiving information on the expenses they could claim; felt lost in the system regarding the ease of making clinic appointments, and once made they were routinely not seen on time for these appointments. Donors also negatively commented on aftercare, the location and condition of the donation room, and information on contraception. In addition, Ovarian Hyperstimulation Syndrome was frequently reported, with these egg donors believing that clinic staff were not concerned with their physical or emotional well-being, but were instead disproportionately focused on extracting the eggs. Conclusions The multifaceted notion of donors highlights the complexity inherent to the gamete donation process, which comprises various aspects of uncertainty in the donation system, and ambiguity in the donation process. Categorising donors as Altruist, Customer, and Patient, conveys the particular importance of staff communication and treatment in donor care. These categories are not mutually exclusive however, in that an individual donor may experience more than one of these perspectives during the course of their gamete donation journey. Finally, there were a number of exemplar cases, where donors reported high satisfaction throughout, and these correlated with them being given a single point of contact at the clinic. Subject to resource constraints, we suggest that this practice should be implemented throughout clinics in the UK, so that donors have access to dedicated clinic staff who not only support them emotionally and physically throughout the gamete donation process, but also ensure that communication is open, clear, timely, and consistent.

Interprofessional education and practice guide: designing ethics-orientated interprofessional education for health and social care students

ABSTRACT Health and social care professionals are required to work together to deliver person-centered care. Professionals therefore find themselves making decisions within multidisciplinary teams. For educators, there has been a call to bring students from differing professions together to learn to enable more effective teamwork, interprofessional communication, and collaborative practice. This multidisciplinary working is complicated by the increasingly complex nature of ethical dilemmas that health and social care professionals face. It is therefore widely recognized that the teaching and learning of ethics within health and social care courses is valuable. In this paper, we briefly make the case in support of teaching and learning health and social care ethics through the medium of interprofessional education (IPE). The purpose of this paper is to provide guidance to educators intending to design ethics-orientated IPE for health and social care students. The guidance is based on the ongoing experiences of designing and implementing ethics-orientated IPE across five departments within two universities located in the North of England over a five-year period. Descriptions of the ethics-orientated IPE activities are included in the guide, along with key resources recommended.