Focusing mainly on respect for autonomy, particularly autonomous choices and actions in bioethical decisions, I examine several complexities of enacting this respect through the case of a fourteen-year-old boy who died after being allowed to refuse a necessary blood transfusion on religious grounds. I argue that thicker concepts of autonomy, closely connected with relational autonomy, direct our attention to aspects of respect for autonomy that are often neglected or underappreciated in much bioethical theory and practice. In particular, they illuminate the (...) interpretive complexity of respecting autonomous choices by focusing attention on the relational context of individuals’ decisions, on respect for individuals’ social-cultural beliefs and values, and on the temporality of selves, as expressed in their past consent or future consent as well as in—and sometimes in contradiction to—their present consent or dissent. However, it is important not to convert the illuminating and valuable insights from theories of relational autonomy into necessary conditions of autonomous choices and actions and hence of respect for autonomy. (shrink)

This article discusses the new reproductive technology of egg freezing in the context of existing literature on gender, medicalization, and infertility. What is unique about this technology is its use by women who are not currently infertile but who may anticipate a future diagnosis. This circumstance gives rise to a new ontological category of “anticipated infertility.” The author draws on participant observation and a qualitative analysis of scientific, mainstream, and marketing literature to identify and compare the representation of two different (...) candidates for egg freezing: women with cancer and healthy young women. Although both populations experience anticipated infertility, their dichotomous portrayals as appropriate candidates are demonstrative of gender norms linking women to motherhood. Egg freezing is a concise illustration of how the medicalization of women’s bodies and bodily processes masks a host of cultural anxieties about aging, illness, reproduction, and risk. (shrink)

The principle of respect for autonomy in clinical ethics is frequently linked to bioethics’ neglect of community-level ethical considerations. I argue that the latter is not an inevitable consequence of the former; rather, that neglect results from a common interpretation of respect for autonomy in solely synchronic and individual terms. A relational understanding of autonomy reveals the way in which respect inescapably involves diachronic and social dimensions. When these are acknowledged, the association between respect for autonomy and liberal individualism is (...) weakened. Such respect has more in common with communitarian approaches, and it need not conflict with the incorporation of collective-level values into ethical deliberation. (shrink)

ABSTRACT The part played by time in ethics is often taken for granted, yet time is essential to moral decision making. This paper looks at time in ethical decisions about having a genetic test. We use a patient‐centred approach, combining empirical research methods with normative ethical analysis to investigate the patients' experience of time in (i) prenatal testing of a foetus for a genetic condition, (ii) predictive or diagnostic testing for breast and colon cancer, or (iii) testing for Huntington's disease (...) (HD). We found that participants often manipulated their experience of time, either using a stepwise process of microdecisions to extend it or, under the time pressure of pregnancy, changing their temporal ‘depth of field’. We discuss the implications of these strategies for normative concepts of moral agency, and for clinical ethics. (shrink)

Egg freezing has led to heated debates in healthcare policy and bioethics. A crucial issue in this context concerns the distinction between “medical” and “social” egg freezing —contrasting objections to bio-medicalization with claims for oversimplification. Yet such categorization remains a criterion for regulation. This paper aims to explore the “regulatory boundary-work” around the “medical”–”social” distinction in different egg freezing regulations. Based on systematic documents’ analysis we present a cross-national comparison of the way the “medical”–”social” differentiation finds expression in regulatory frameworks (...) in Austria, Germany, Israel, and the Netherlands. Findings are organized along two emerging themes: the definition of MEF and its distinctiveness—highlighting regulatory differences in the clarity of the definition and in the medical indications used for creating it ; and hierarchy of medical over social motivations reflected in usage and funding regulations. Blurred demarcation lines between “medical” and “social” are further discussed as representing a paradoxical inclusion of SEF while offering new insights into the complexity and normativity of this distinction. Finally, we draw conclusions for policymaking and the bioethical debate, also concerning the related cryopolitical aspects. (shrink)

The aim of this article is to provide a systematic reconstruction and critique of what is taken to be a central ethical concern against the use of non-medical egg freezing. The concern can be captured in what we can call the individualisation argument. The argument states, very roughly, that women should not use NMEF as it is an individualistic and morally problematic solution to the social problems that women face, for instance, in the labour market. Instead of allowing or expecting (...) women to deal with them on an individual level, we should address them by challenging the patriarchal structures of the labour market—for example, by securing equal pay, or paid maternal leave, or ‘paid paternal [partner] leave and sick leave and affordable child care’. It will be made clear that there are several versions of this argument. The author will try to elaborate this claim, and it will be explained that the differences depend on the way in which bioethicists believe that individuals use of NMEF is morally problematic, compared with the alternative of securing social change for women in, say, the labour market. Finally, a critical discussion of three versions of the individualisation argument will follow, and it will be shown why all versions are on rather thin ice, or in other words, that they are implausible. (shrink)

Whether sociology should be part of bioethics has been extensively debated and critiqued. Feminist bioethics has long recognized the role of empirical work in bioethical inquiry; however, much feminist work in bioethics has been sidelined due to critiques of the role of social and sociological theory in bioethics research. In this essay, I examine how sociology plays a much deeper role in bioethical inquiry beyond the contribution of empirical methods. Building on these approaches, I show, through a case study, how (...) social and sociological theory play as vital a role in conducting comprehensive bioethical inquiry as sociological methods and methodology, and thus should no longer be sidelined in empirical bioethics. (shrink)

Recent research on patient decision-making reveals a disconnect between theories of autonomy, agency, and decision-making and their practice in contemporary clinical encounters. This study examines these concepts in the context of female patients making oncofertility decisions in the United Kingdom in light of the phenomenon of “being guided.” Patients experience being guided as a way to cope with, understand, and defer difficult treatment decisions. Previous discussions condemn guided decision-making, but this research suggests that patients make an informed, autonomous decision to (...) be guided by doctors. Thus, bioethicists must consider the multifaceted ways that patients enact their autonomy in medical encounters. (shrink)

In this article I discuss the little examined relationship between time and patient autonomy. Using the findings from a study on the experience of premenopausal cancer patients making fertility preservation decisions during their treatment, I focus on how the patients in the study understood time, and how this understanding interacted with and influenced their decision-making. I then analyse in more depth the importance of time in patient decision-making, and the relationship of time to concepts of patient autonomy and decision-making in (...) the field of bioethics more generally. Focusing on the relational conception of autonomy, I conclude that time is an integral part of patient autonomy which warrants further research, such that it can be better integrated into concepts of patient autonomy, and the policy and guidelines that they inform and influence. (shrink)

Researchers have documented the dominance of intensive mothering ideologies and their impact on mothers and their families. However, the effect of these ideologies on childless women has received little attention. I draw on interview data to examine the parenting ideologies of childless women with electively frozen eggs. I demonstrate that incorporation of and commitment to intensive mothering ideologies affect fertility decision making among these childless women. I find that concerns about the heavy burdens of intensive motherhood, coupled with unsupportive partners (...) and workplaces, produce ambivalence toward childbearing and a strategy of fertility postponement. I extend the literatures on intensive mothering, reproductive decision making, assisted reproductive technologies, and elective egg freezing by identifying egg freezing as an expression of the gendering of fertility risk and as a means of “doing security.” Participants view egg freezing as a means of managing risk in two primary ways: as a means of securing access to biogenetic motherhood by managing biological risks of infertility and fetal genetic abnormality, and as a means of enabling intensive parenting by managing temporal risks inherent in coordinating careers, relationships, and childbearing. (shrink)

BackgroundEgg freezing has emerged as a technology of assisted reproductive medicine that allows women to plan for the anticipated loss of fertility and hence to preserve the option to conceive with their own eggs. The technology is surrounded by value-conflicts and is subject to ongoing discussions. This study aims at contributing to the empirical-ethical debate by exploring women’s viewpoints on egg freezing in Austria, where egg freezing for social reasons is currently not allowed.MethodsQ-methodology was used to identify prevailing viewpoints on (...) egg freezing. 46 female participants ranked a set of 40 statements onto a 9-column forced choice ranking grid according to the level of agreement. Participants were asked to explain their ranking in a follow-up survey. By-person factor analysis was used to identify distinct viewpoints which were interpreted using both the quantitative and the qualitative data.ResultsThree distinct viewpoints were identified:(1) “women should decide for themselves”,(2) “we should accept nature but change policy”, and (3) “we need an informed societal debate”. These viewpoints provide insights into how biomedical innovations such as egg freezing are perceived by women in Austria and illustrate the normative tensions regarding such innovations.ConclusionsAcknowledging the different prioritizations of values regarding assisted reproductive technologies is important to better understand the underlying normative tensions in a country where egg freezing for social reasons is currently not allowed. The study adds new empirical insights to the ongoing debate by outlining and discussing viewpoints of those directly affected: women. Following up on the lay persons perspective is particularly important in the context of future biomedical innovations that may challenge established norms and create new tensions. It therefore also adds to the societal debate and supports evidence-informed policy making in that regard. (shrink)

This article explores the social benefits and moral arguments in favour of women and couples freezing eggs and embryos for social reasons. Social IVF promotes equal participation by women in employment; it offers women more time to choose a partner; it provides better opportunities for the child as it allows couples more time to become financially stable; it may reduce the risk of genetic and chromosomal abnormality; it allows women and couples to have another child if circumstances change; it offers (...) an option to women and children at risk of ovarian failure; it may increase the egg and embryo pool. There are strong arguments based on equal concern and respect for women which require that women have access to this new technology. Freezing eggs also avoids some of the moral objections associated with freezing embryos. (shrink)

Recently, Petersen provided in this journal a critical discussion of individualisation arguments in the context of social egg freezing. This argument underlines the idea that it is morally problematic to use individual technological solutions to solve societal challenges that women face. So far, however, there is a lack of empirical data to contextualise his central normative claim that individualisation arguments are implausible. This article discusses an empirical study that supports a contextualised reading of the normative work of Petersen. Based on (...) a qualitative interview study, we found that most women could make sense of this argument but addressed other concerns that are overlooked in the premises of moral individualisation arguments, for instance, the influence of relationship formation on the demand of egg freezing. Furthermore, women did not experience social egg freezing as morally problematic. Nonetheless, the interviewees pointed to a need of more societal solutions and even actively advocated for efforts to increase accessibility such as a partial reimbursement and better quality of information. The implications of these findings for empirical bioethics are discussed. While more research is needed, we argue that, in order to better address individualisation arguments and related ethical concerns, we need to contextualise normative evaluations within women’s moral reasoning. (shrink)

Social egg freezing has become an expanding clinical practice and there is a growing body of empirical literature on women's attitudes and the sociocultural implications of this phenomenon. Yet, its impact remains subject to ethical controversy. This article reports on a qualitative study, drawing on 18 interviews with women who had elected to initiate at least one egg freezing cycle in Belgium. Our findings, facilitated by a ‘symbiotic empirical ethics’ approach, shed light on the concerns and perceptions that accompany women's (...) decisions while supporting a more context-sensitive reading of the ethical debate. We identified three key themes: feeling overwhelmed with uncertainty and a threatening future, bodily discomfort and distress during the medical process, and the endless pursuit of peace of mind. One of the issues that emerges from these findings is the risk ritual function of social egg freezing, referring to routine actions of risk anticipation that mitigate uncertainty and express a sense of individual responsibility. While more research is needed, this conceptualisation provides a starting point to flesh out the wider context of this moral practice and its symbolic meaning for women. (shrink)