Women's experiences of receiving information about and consenting or declining to participate in a randomized controlled trial involving episiotomy in vacuum-assisted delivery: a qualitative study.

BACKGROUND: Information about and invitation to participate in a clinical trial involving an intervention during childbirth may cause fear or worry in pregnant women. The aim of this study was to describe nulliparous women's experiences of receiving an invitation to participate in a randomized controlled trial (RCT) of lateral episiotomy versus no episiotomy in vacuum-assisted delivery (EVA trial). METHODS: This qualitative study was nested in the ongoing EVA trial. Data were collected through semistructured telephone interviews with 23 women regarding their experiences of the information and invitation to participate in the EVA trial. Interviews were audio-recorded and transcribed verbatim. A qualitative content analysis was used to analyse the interview contents. RESULTS: Three main experience categories were identified among the participants. "Timing of trial information and understanding" revealed that women preferred to obtain information about the trial early on during pregnancy. "Reasons to consent to or decline participation in the trial" encompassed a variety of reasons for women to consent, such as goodwill for science or personal benefits, or to decline, such as not wanting to be randomized or fear of increased risk of having a vacuum-assisted delivery. "Thoughts evoked regarding childbirth" were diverse, ranging from not being affected at all to having increased anxiety. CONCLUSIONS: The women's experience of receiving an invitation to participate in an RCT of episiotomy in vacuum-assisted delivery varied widely, from immediately giving consent without further worries to increased anxiety or declining participation. Early and personal information with time for reflection was considered most satisfactory. TRIAL REGISTRATION: ClinicalTrials.gov NCT02643108 . Registered on December 28, 2015. The Lateral Episiotomy or Not in Vacuum Assisted Delivery in Non-parous Women (EVA) trial was registered at www.clinicaltrials.gov .

May I have your uterus? The contribution of considering complexities preceding live uterus transplantation.

Uterus transplantation combined with in vitro fertilisation (IVF) (henceforth called UTx-IVF) as a treatment for infertility caused by an absence or malfunction of the uterus is advancing. About 50 transplantations have been conducted worldwide and at least 14 children have been born-9 of them by women taking part in a Swedish research project on UTx-IVF. The Swedish research protocol initially stated that the potential recipient must 'have her own donor' who is preferably related to the recipient. But what does it mean to ask someone for a uterus? What challenges does this question instigate? And what norms may it enact? In this article, I explore how 10 women-who have considered, and sometimes pursued, UTx-IVF-describe their experiences of searching for a donor. I aim to show how an analysis of such accounts can help us unpack some of the specific relational and gendered dimensions of UTx-IVF and by doing so enrich discussions of risks, benefits, care and support in UTx-IVF. Drawing on research in social sciences and medical humanities that has demonstrated how assisted reproductive technologies and organ donation can provoke social and familial conundrums, with respect to such topics as embodiment and identity, I present three patterns that describe different dimensions of the interviewees' quest for a uterus donor. I discuss the negotiations that took place, how expectations unfolded and how entanglements were managed as the interviewees considered asking someone for a donation. Such an examination, I suggest, contributes to make care and support more attuned to the experiences and entanglements that UTx-IVF entails for those pursuing it. This will become increasingly important if (or when) UTx-IVF becomes part of general healthcare. To conclude, I problematise responsibilities and relational challenges in medical innovation, and in this way provide insights into how the ethical debate over UTx-IVF can broaden its scope.

The Ethics of the Societal Entrenchment-approach and the case of live uterus transplantation-IVF.

In 2014, the first child in the world was born after live uterus transplantation and IVF (UTx-IVF). Before and after this event, ethical aspects of UTx-IVF have been discussed in the medical and bioethical debate as well as, with varying intensity, in Swedish media and political fora. This article examines what comes to be identified as important ethical problems and solutions in the media debate of UTx-IVF in Sweden, showing specifically how problems, target groups, goals, benefits, risks and stakes are delineated and positioned. It also demonstrates how specific assumptions, norms and values are expressed and used to underpin specific positions within this debate, and how certain subjects, desires and risks become shrouded or simply omitted from it. This approach-which we label the Ethics of the Societal Entrenchment-approach, inspired by Koch and Stemerding (1994)-allows us to discuss how the identification of something as the problem helps to shape what gets to be described as a solution, and how specific solutions provide frameworks within which problems can be stated and emphasised. We also offer a critical discussion of whether some of these articulations and formations should be seen as ethically troubling, and if so, why.

Positioning uterus transplantation as a 'more ethical' alternative to surrogacy: Exploring symmetries between uterus transplantation and surrogacy through analysis of a Swedish government white paper.

Within the ethics and science literature surrounding uterus transplantation (UTx), emphasis is often placed on the extent to which UTx might improve upon, or offer additional benefits when compared to, existing 'treatment options' for women with absolute uterine factor infertility, such as adoption and gestational surrogacy. Within this literature UTx is often positioned as superior to surrogacy because it can deliver things that surrogacy cannot (such as the experience of gestation). Yet, in addition to claims that UTx is superior in the aforementioned sense it is also often assumed (either implicitly or explicitly) that UTx is less fraught with ethical difficulties and thus should be considered a less morally problematic option. This article seeks to examine this assumption. Given that much UTx research has been performed in Sweden, a country where surrogacy is effectively although not currently explicitly forbidden, we do this through an analysis of the arguments underpinning a 2016 Swedish white paper which considered amending existing policy such that altruistic surrogacy arrangements would be permitted. By applying the white paper's arguments for a restrictive position on altruistic surrogacy to the case of UTx using living altruistic donors we find that such arguments, if they hold in the case of surrogacy, apply similarly to UTx. We thus suggest that, for reasons of consistency, a similar stance should be taken towards the moral and legal permissibility of these two practices.

Hooked on a feeling? Exploring desires and 'solutions' in infertility accounts given by women with 'atypical' sex development.

Sociocultural meanings accorded to infertility, and rapid developments in assisted reproductive technologies, have long been central concerns in feminist and social scientific research. However, knowledge is scarce concerning how individuals make sense of infertility when it is disclosed in adolescence, for example as the result of an 'atypical' sex development, rather than as a result of failed conception. This article examines how understandings of desires, kinship and 'solutions' take shape and are negotiated in the accounts women give of infertility resulting from 'atypical' sex development. Through a thematic analysis it demonstrates how the interviewees described their desire for relationships and connectedness, which they considered to be made possible through pregnant embodiment, and details how these desires connected to a preference for medical 'solutions'. Specifically, the article discusses how the interviewees' accounts exemplifies how biological kinship can be 'done' without giving precedence to genetics. By addressing the specificities of finding out about infertility as a result of 'atypical' sex development, it furthermore highlights gaps in the common medical definition of infertility. These findings underscore the urgency of examining how definitions of infertility obscure certain experiences and consequently limit affected individuals' access to support and treatment. In conclusion, it is suggested that the article contributes to a more positive discourse on infertility in feminist scholarship by teasing out the temporal dimensions of how affected individuals 'make active use' of assisted reproductive technologies to mitigate uncertainty and maintain hope, while at the same time renegotiating dominant norms of kinship.

'You have all those emotions inside that you cannot show because of what they will cause': Disclosing the absence of one's uterus and vagina.

This article examines young women's experiences of telling others that they have no uterus and no, or a so-called small, vagina - a condition labelled 'congenital absence of uterus and vagina', which falls within the larger category of 'atypical' sex development. Our aim is to investigate how affective dissonances such as fear and frustration are expressed in young women's narratives about letting others know about their 'atypical' sex development, and how these women narrate desired steps to recognition. By drawing on feminist writings on the performativity of affects or emotions, we examine what affective dissonances accomplish within three identified narratives: how affective dissonances may contribute to the women's positioning of themselves vis-à-vis other individuals and how affective dissonances can imply a strengthening and/or questioning of norms about female embodiment and heterosexuality. This allows us to tease out how routes for questioning of these norms become available through the three narratives that together form a storyline of coming out about a congenital absence of a uterus and vagina in the Swedish context. Furthermore, by demonstrating how others' responses shape the women - their understandings of their own bodies, their envisaged future disclosures and their relations - our analysis highlights the multifaceted intersubjective and in other ways relational, affective and temporal dimensions of coming out about one's 'atypical' sex development.

"Differently normal" and "normally different": negotiations of female embodiment in women's accounts of 'atypical' sex development.

During recent decades numerous feminist scholars have scrutinized the two-sex model and questioned its status in Western societies and medicine. Along the same line, increased attention has been paid to individuals' experiences of atypical sex development, also known as intersex or 'disorders of sex development' (DSD). Yet research on individuals' experiences of finding out about their atypical sex development in adolescence has been scarce. Against this backdrop, the present article analyses 23 in-depth interviews with women who in their teens found out about their atypical sex development. The interviews were conducted during 2009-2012 and the interviewees were all Swedish. Drawing on feminist research on female embodiment and social scientific studies on diagnosis, I examine how the women make sense of their bodies and situations. First, I aim to explore how the women construe normality as they negotiate female embodiment. Second, I aim to investigate how the divergent manners in which these negotiations are expressed can be further understood via the women's different access to a diagnosis. Through a thematic and interpretative analysis, I outline two negotiation strategies: the "differently normal" and the "normally different" strategy. In the former, the women present themselves as just slightly different from 'normal' women. In the latter, they stress that everyone is different in some manner and thereby claim normalcy. The analysis shows that access to diagnosis corresponds to the ways in which the women present themselves as "differently normal" and "normally different", thus shedding light on the complex role of diagnosis in their negotiations of female embodiment. It also reveals that the women make use of what they do have and how alignments with and work on norms interplay as normality is construed.

Moral tales of parental living kidney donation: a parenthood moral imperative and its relevance for decision making.

Free and informed choice is an oft-acknowledged ethical basis for living kidney donation, including parental living kidney donation. The extent to which choice is present in parental living kidney donation has, however, been questioned. Since parents can be expected to have strong emotional bonds to their children, it has been asked whether these bonds make parents unable to say no to this donation. This article combines a narrative analysis of parents' stories of living kidney donation with a philosophical discussion of conditions for parental decision-making. Previous research has shown that parents often conclude that it is "natural" to donate. Our study shows that this naturalness needs to be understood as part of a story where parental living kidney donation is regarded as natural and as a matter of non-choice. Our study also highlights the presence of a parenthood moral imperative of always putting one's child's needs before one's own. On the basis of these results, we discuss conditions for decision-making in the context of parental LKD. We argue that the presence of a parenthood moral imperative can matter with regard to the decision-making process when parents consider whether to volunteer as living kidney donors, but that it need not hamper choice. We emphasise the need for exploring relational and situational factors in order to understand parental decision-making in the context of parental LKD.