The fertility of moral ambiguity in precision medicine.

Although precision medicine cuts across a large spectrum of professions, interdisciplinary and cross-sectorial moral deliberation has yet to be widely enacted, let alone formalized in this field. In a recent research project on precision medicine, we designed a dialogical forum (i.e. 'the Ethics Laboratory') giving interdisciplinary and cross-sectorial stakeholders an opportunity to discuss their moral conundrums in concert. We organized and carried out four Ethics Laboratories. In this article, we use Simone de Beauvoir's concept of moral ambiguity as a lens to frame the participants' experience with fluid moral boundaries. By framing our approach through this concept we are able to elucidate irremediable moral issues that are collectively underexplored in the practice of precision medicine. Moral ambiguity accentuates an open and free space where different types of perspectives converge and can inform each other. Based on our study, we identified two dilemmas, or thematic interfaces, in the interdisciplinary moral deliberations which unfolded in the Ethics Laboratories: (1) the dilemma between the individual and the collective good; and (2) the dilemma between care and choice. Through our investigation of these dilemmas, we show how Beauvoir's concept of moral ambiquity not only serves as a fertile catalyst for greater moral awareness but, furthermore, how the concept can become an indispensable part of the practices of and the discourse about precision medicine.

"It will not be easy to accept": Parents conflicting attitudes towards pre-exposure prophylaxis for HIV prevention amongst adolescent girls and young women.

BACKGROUND: Pre-exposure prophylaxis, or PrEP, is a pill that has been hailed as a 'game changer' for HIV prevention, based on the belief it provides adolescent girls and young women (AGYW) with a level of user-control. However, engagement with PrEP is often dependent on societal factors, such as social attitudes towards gender, sexuality, and PrEP. As parents' communication on sexual and reproductive health issues with AGYW are central to HIV prevention, it is critical to explore how parents talk and think about PrEP. OBJECTIVE: To examine parental attitudes towards PrEP for HIV prevention amongst adolescent girls and young women in eastern Zimbabwe. METHOD: A qualitative interview study with 14 parents from two districts in Manicaland, eastern Zimbabwe. Interviews were transcribed, translated, and subjected to thematic network analysis. The concept of 'attitudes' steered the analytical work. RESULTS: Parents' attitudes towards PrEP are conflictual, multi-layered, and contingent on the context in which they reflect and talk about PrEP. While parents aspired to be supportive of innovative HIV prevention methods and wanted to see girl-children protected from HIV, they struggled to reconcile this positive and accepting attitude towards PrEP with traditional 'good girl' notions, which stigmatize pre-marital sex. Although a few parents articulated an acceptance of PrEP use amongst their daughters, for many this was simply not possible. Many parents thus co-produce public gender orders that prevent adolescent girls and young women from engaging with PrEP. CONCLUSIONS: While parents' conflicting attitudes towards PrEP may provide spaces and opportunities for change, harmful gender norms and negative attitudes towards PrEP must be addressed at a community and cultural level. Only then can parents and their children have productive conversations about sexual health.

Women and partners' experiences of critical perinatal events: a qualitative study.

OBJECTIVE: The aim of this study was to explore women and partners' experiences following critical perinatal events. DESIGN: This is a qualitative interview study. We conducted semistructured individual interviews with women and their partners in separate rooms. Interviews were analysed thematically and validated by a transdisciplinary group of anthropologists, obstetricians and a midwife. SETTING: Department of obstetrics at a tertiary referral university hospital in Denmark. PARTICIPANTS: Women and partners who had experienced a critical perinatal event within the past 3-12 months. RESULTS: We conducted 17 interviews and identified three main themes: (1) ambivalence towards medicalisation, (2) the extended temporality of a critical birth and (3) postnatal loss of attention from healthcare professionals. Overall, participants expressed a high degree of trust in and quality of provided healthcare during the critical perinatal events. They experienced medicalisation (obstetric interventions) as a necessity, linking them to the safety of the child and their new role as responsible parents. However, some women experienced disempowerment when healthcare professionals overlooked their ability to stay actively involved during birth events. Postnatally, women and their partners experienced shortages of healthcare professional resources, absent healthcare and lack of attention. CONCLUSIONS: Women and their partners' experiences of critical perinatal events begin long before and end long after the actual moment of childbirth, challenging conventional ideas about the birth as being the pivotal event in making families. In future healthcare planning, it is important to to align expectations and guide parental involvement in birth events and to acknowledge the postnatal period as equally crucial.

Postnatal consultations with an obstetrician after critical perinatal events: a qualitative study of what women and their partners experience.

OBJECTIVE: The objective of this study was to explore women's and their partners' experiences with attending postnatal consultations with an obstetrician after critical perinatal events. DESIGN: Qualitative interview study. We did semi-structured individual narrative interviews exploring the lived experiences. Interviews were analysed using a phenomenological approach and the thematic analysis was validated by a transdisciplinary group of anthropologists, obstetricians and a midwife. SETTING: Department of obstetrics at a large hospital in Denmark. PARTICIPANTS: We did a qualitative study with 17 participants (10 women and 7 partners) who had experienced critical perinatal events. RESULTS: Five major themes were identified: (1) a need to gain understanding and make sense of the critical perinatal events, (2) a need for relational continuity, (3) the importance of discussing emotional effects as well as physical aspects of occurred events, (4) preparing for future pregnancies and (5) closure of the story.Most of the participants emphasised the importance of knowing the obstetrician undertaking the postnatal consultation. The majority of the participants described a need to discuss the emotional effects of the experience as well as the physical aspects of occurred events. The postnatal consultation served as an approach to obtain a positive closure of their birth story and to feel confident about potential future pregnancies. CONCLUSIONS: This interview-based study suggests that postnatal consultation with an obstetrician might be an important tool for women and their partners in understanding the course of events during the critical birth experience and in processing it and preparing for future pregnancies. It appears to be important to assign an obstetrician whom they already know and to encourage them to discuss not only physical aspects of what happened but also the emotional effects of the experience.

Authoring experience: the significance and performance of storytelling in Socratic dialogue with rehabilitating cancer patients.

This article examines the storytelling aspect in philosophizing with rehabilitating cancer patients in small Socratic dialogue groups (SDG). Recounting an experience to illustrate a philosophical question chosen by the participants is the traditional point of departure for the dialogical exchange. However, narrating is much more than a beginning point or the skeletal framework of events and it deserves more scholarly attention than hitherto given. Storytelling pervades the whole Socratic process and impacts the conceptual analysis in a SDG. In this article we show how the narrative aspect became a rich resource for the compassionate bond between participants and how their stories cultivated the abstract reflection in the group. In addition, the aim of the article is to reveal the different layers in the performance of storytelling, or of authoring experience. By picking, poking and dissecting an experience through a collaborative effort, most participants had their initial experience existentially refined and the chosen concept of which the experience served as an illustration transformed into a moral compass to be used in self-orientation post cancer.

The social life of genetic knowledge: a case-study of choices and dilemmas in cancer genetic counselling in Denmark.

This article explores the social life of genetic knowledge in the context of cancer genetic counselling in Denmark. I focus on a specific case that occurred during my study of the processes through which genetic risk profiles are produced and through which knowledge of genes and kinship comes to appear both meaningful and contestable to counsellees. The analysis illuminates how participants in cancer genetic counselling experience gaps between, on the one hand, genetic information about kinship and predispositions to hereditary disease and, on the other hand, social experiences of kinship and risks. I argue that this gap constitutes a space for agency in which people make their own connections and interpretations. It is in this space that new social relations and understandings of bodies, health and kinship are crafted. Following the social life of genetic knowledge highlights how knowledge is practiced through social relations and how knowing is grounded in particular interactions and situated concerns.

[Social and family considerations in genetic counselling]. / Sociale og familiemaessige problemstillinger ved genetisk rådgivning.

Genetic knowledge can be viewed as an important tool in the prevention of hereditary disease. This article discusses the social issues that the link between genetics and prevention raises in cancer genetic counselling and testing. In particular, the moral dilemmas which health professionals and patients face in relation to disclosing genetic information to kin are described. The authors argue that questions about disclosing information and balancing autonomy and responsibility are not only ethical questions but biopolitical issues.

Genetics and prevention: a policy in the making.

This article explores the process through which the advances of genetic research are incorporated into public health care in Denmark. Drawing on ethnographic fieldwork in cancer genetic counselling, the implementation of new medical advances is investigated by following the establishment of a policy on informing relatives at risk of hereditary cancer. This case material provides the occasion to examine how policies are shaped in a governmental process through which different actors seek to establish a common goal for a specific health practice. The struggle to define such a goal implies a struggle to define where to draw the line between health and disease and what makes up a healthy person in the context of genetic knowledge. The authors argue that in the process of establishing a policy in the field of cancer genetics the imperative of prevention comes to provide the framework within which an ethics of rights and responsibilities is constituted and the target group of cancer genetic counselling defined. This ethics is not determined by or inherent in genetic technology itself, but constituted in a social process and therefore negotiated within pre-existing frameworks of understanding in professional practice.

Providing solutions--defining problems: the imperative of disease prevention in genetic counselling.

Common sense states that problems make people look for solutions. This article proposes the contrary, i.e. that solutions provide the framework within which certain problems can be stated and handled. Drawing on observations of cancer genetic counselling in Denmark and official recommendations concerning the practice of genetic counselling, this article explores how the new prophylactic possibilities become the lens through which risk factors are identified and defined as problems that require action. In particular, the question of how new possibilities to prevent hereditary disease challenge the traditional non-directive ethos of clinical genetics provides the occasion to analyse governmentality processes in clinical genetic dialogues. The article argues that an imperative of choosing disease prevention in genetic counselling transforms the notion of non-directiveness as well as the notions of autonomy and informed consent. The transforming event is the transmission of expert knowledge on genetic risk from counsellor to counsellee. This process of knowledge transmission creates autonomous individuals who, through the medium of choice, consent voluntarily to take personal responsibility for themselves and their relatives. Conceived as a health technology, genetic counselling is a practice through which hegemonic knowledge claims about saving lives by acting responsibly is created. Disease prevention as the solution to increased risks comes to stand out as the right way of relating to oneself, the family, and society.