Choosing embryos: Ethical complexity and relational autonomy in staff accounts of PGD

Copyright @ 2008 the authors. This article is available in accordance with the Creative Commons Deed, Attribution 2.5, see http://creativecommons.org/licenses/by-nc-nd/2.5/deed.en_CA.The technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce ‘ethical problems’ for practitioners, scientists and others working in the specialty of PGD in the UK. Two ‘grey areas’ raised by staff are discussed in terms of how far staff are, or in the future may be, able to support autonomous choices of women/couples: accepting ‘carrier’ embryos within the goal of creating a ‘healthy’ child; and sex selection of embryos for social reasons. These grey areas challenged the staff’s resolve to offer individual informed choice, in the face of their awareness of possible collective social effects that might ensue from individual choices. We therefore argue that these new forms of choice pose a challenge to conventional models of individual autonomy used in UK genetic and reproductive counselling, and that ‘relational autonomy’ may be a more suitable ethical model to describe the ethical principles being drawn on by staff working in this area.The Wellcome Trust Biomedical Ethics Programme, who funded the project ‘Facilitating choice, framing choice: the experience of staff workingin pre-implantation genetic diagnosis’ (no: 074935)

Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic

Copyright @ 2006 Elsevier Ltd. All rights reserved.Through the lens of the ‘welfare of the child’ assessment, this paper explores how staff working in the area of in vitro fertilisation and preimplantation genetic diagnosis (IVF/PGD) balance reflexive relations of legitimacy and accountability between the public and private spheres, and between medicine, the citizen and the state. The wider research of which this analysis is a part uses multiple methods to study two National Health Service Assisted Conception Units in England. Research methods used included observation clinics and interviews with staff from a range of disciplines. We illustrate how the staff reveal tensions between their views that the welfare of the child assessment can be seen as intrusive and discriminatory, and on the other hand that medical intervention in reproduction should be socially and professionally accountable. These tensions can be understood sociologically in terms of a gradual movement from socially based solutions to fertility problems and disabilities, towards a biomedical, and arguably genetically oriented world view of such problems. Rather than being viewed as discrete, these two orientations should be seen as indicating an emergent direction of travel along a continuum, with elements of both being present in the accounts. We argue that consideration of the welfare of the child involves staff in ethical boundary-work across the two orientations and between the accountabilities and responsibilities of healthcare professionals, individuals and the state.The Wellcome Trust Biomedical Ethics Programme, who funded the project ‘Facilitating choice, framing choice: the experience of staff working in preimplantation genetic diagnosis’ (no. 074935)

Educators’ Perceptions of Integrated STEM: A Phenomenological Study

The study utilized a semistructured interview approach to identify phenomena that are related to integrated STEM education by addressing the question: What are the critical components of an integrated STEM definition and what critical factors are necessary for an integrated STEM definition’s implementation? Thirteen expert practitioners were identified and interviewed. The interviews were transcribed and analyzed for content in three different ways: by person, by interview question, and across all interviews using exploratory data analysis methods. Ten identified phenomena were grouped into two classes: structural implementation phenomena and interpersonal implementation phenomena. The structural implementation phenomena were: subject integration, project-based learning, and design-based education; nontraditional assessment; STEM content; time; professional development; and outside support (from businesses and industry). The interpersonal implementation phenomena include: leadership; collaboration; willingness; authentic, relevant, and meaningful experiences for participants; and outside support (from people in business and industry). The analysis concluded that these phenomena could be considered both critical components and key implementation factors due to their interconnected nature. The data showed that the identified phenomena are necessary as part of an integrated STEM curriculum, which makes them critical components, and that the identified phenomena are critical to create and implement an integrated STEM setting, making them implementation factors as well. Implications for further research include: the possibility of looking at the interconnectedness of the phenomena, examining how each phenomenon contributes to integrated STEM, and measuring current STEM implementations to see if they incorporate the identified phenomena. Additionally, inclusion of an absent phenomenon could be researched to see if integrated STEM education is improved

The social practice of rescue: the safety implications of acute illness trajectories and patient categorisation in medical and maternity settings.

The normative position in acute hospital care when a patient is seriously ill is to resuscitate and rescue. However, a number of UK and international reports have highlighted problems with the lack of timely recognition, treatment and referral of patients whose condition is deteriorating while being cared for on hospital wards. This article explores the social practice of rescue, and the structural and cultural influences that guide the categorisation and ordering of acutely ill patients in different hospital settings. We draw on Strauss et al.'s notion of the patient trajectory and link this with the impact of categorisation practices, thus extending insights beyond those gained from emergency department triage to care management processes further downstream on the hospital ward. Using ethnographic data collected from medical wards and maternity care settings in two UK inner city hospitals, we explore how differences in population, cultural norms, categorisation work and trajectories of clinical deterioration interlink and influence patient safety. An analysis of the variation in findings between care settings and patient groups enables us to consider socio-political influences and the specifics of how staff manage trade-offs linked to the enactment of core values such as safety and equity in practice

Barriers to women's access to alongside midwifery units in England

Background: Alongside midwifery units (AMUs) are managed by midwives and proximate to obstetric units (OUs), offering a home-like birth environment for women with straightforward pregnancies. They support physiological birth, with fast access to medical care if needed. AMUs have good perinatal outcomes and lower rates of interventions than OUs. In England, uptake remains lower than potential use, despite recent changes in policy to support their use. This article reports on experiences of access from a broader study that investigated AMU organisation and care. Methods: Organisational case studies in four National Health Service (NHS) Trusts in England, selected for variation geographically and in features of their midwifery units. Fieldwork (December 2011 to October 2012) included observations (>100 h); semi-structured interviews with staff, managers and stakeholders (n = 89) and with postnatal women and partners (n = 47), on which this paper reports. Data were analysed thematically using NVivo10 software. Results: Women, partners and families felt welcome and valued in the AMU. They were drawn to the AMUs’ environment, philosophy and approach to technology, including pain management. Access for some was hindered by inconsistent information about the existence, environment and safety of AMUs, and barriers to admission in early labour. Conclusions:Key barriers to AMUs arise through inequitable information and challenges with admission in early labour. Most women still give birth in obstetric units and despite increases in the numbers of women birthing on AMUs since 2010, addressing these barriers will be essential to future scale-up

Improving Research into Models of Maternity Care to Inform Decision Making.

In a Perspective, Ank de Jonge and Jane Sandall discuss research on models of maternity care led by midwives

Women as moral pioneers? Experiences of first trimester antenatal screening

Copyright @ 2005 Elsevier Ltd.The implementation of innovative medical technologies can raise unprecedented ethical, legal and social dilemmas. This is particularly so in the area of antenatal screening, which is dominated by the language of risk and probabilities. Second trimester serum screening for Down's syndrome and neural tube defects has a well-established place in antenatal care. Increasingly, first trimester screening with biochemical and ultrasound markers is being proposed as advance on this, yielding higher detection rates of Down's syndrome at an earlier gestational age. This article explores the experiences of 14 women offered innovative first trimester screening, which takes place within the context of a detailed ultrasound scan. The study is set within the UK, where recent policy changes mean that the offer of screening for fetal anomalies, particularly Down's syndrome, will become a routine part of antenatal care and offered to all pregnant women. This paper focuses on the significance of the scan in first trimester screening, and some of the potential dilemmas for women that can result from this. It then discusses the ways in which women made their decisions about screening, in particular, their work as ‘moral pioneers’. We found that the part played by the ultrasound scan in first trimester screening, particularly in relation to the higher-quality images now being obtained, has the potential to introduce new and novel ethical dilemmas for pregnant women. Although concerns have been raised about pregnant women viewing ultrasound scans as benign, many of the women reported having thought carefully through their own moral beliefs and values prior to screening. It seems that whatever other implications they may have, first trimester screening technologies will continue the tradition of pregnant women acting as ‘moral pioneers’ in increasingly complex settings.ESRC/MRC Innovative Health Technologies Programme for funding the project (grant no: L218252042). CW acknowledges the support of The Wellcome Trust Biomedical Ethics Programme in funding her postdoctoral fellowship, which enabled her to work on this project

Women and their birth partners' experiences following a primary postpartum haemorrhage: a qualitative study.

BACKGROUND: Postpartum haemorrhage (PPH) is a common obstetric complication. Rates of PPH are increasing in a number of developed countries. This is concerning as PPH is recognised as a leading cause of maternal morbidity and mortality which includes psychological and emotional distress. There is limited understanding of the emotional impact of PPH experienced by women and their birth partners. This study qualitatively describes the experiences of women and their birth partners who experienced a primary PPH. METHODS: Semi-structured interview study. Couples were recruited via maximum variation sampling, which, by purposive sampling drew participants from three groups depending on the degree of PPH: minor (500-1000 ml), moderate (1000-2000 ml) and severe (>2000 ml). Interviews took place from 4 to 14 months post birth, and data were analysed via Framework analysis. RESULTS: In this qualitative study, 11 women and six partners were interviewed. Data were organised into four interrelated themes; Control, Communication, Consequence, Competence. Just over half of the women and their birth partners were unaware they had a PPH, and would have preferred more information either at the time or in the postnatal period. The findings suggest that birth partners also required more information, especially if separated from their partner during the PPH. CONCLUSIONS: This study provides valuable insights into women's reports of their feelings and experiences during and after a PPH, and how their partners feel having observed a PPH. This study suggests that women who have had a PPH of any volume would like more information. Further investigations into the timings, methods and effectiveness of discussions following a PPH are recommended