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)

So-called “social egg freezing” allows a woman to retain the possibility of trying to have a child with her own oocytes later in life, even after having become infertile in the strict sense of the word.There is a debate about whether it is morally permissible at all, the extent to which it should be permitted legally or even supported, and whether it is ethically desirable. This paper contributes some thoughts to the issue of ethical desirability. More precisely it deals with (...) the question of whether there is any valuable argument to be made on the basis of the idea of life phases and normative expectations related to them. So the question is: Is there a right time in life to have a child, and does this speak against or in favor of social freezing? This question is answered in three steps. First, I will give an overview of ethical arguments that are mostly put forward in favor or against the use of social egg freezing and show that and why the question of life phases should be taken into account. Second, I will sketch what I understand by phases of life, more precisely, what I understand by normatively conceptualized life stages, that are to be distinguished from other kinds of life phases, and how they relate to a good life. Third, I will present two arguments that rely on the idea of life stages and speak against social egg freezing. However, I will criticize them and instead show that from the perspective of life stages nothing speaks against using the technique within certain limits. (shrink)

A review of literature published a decade ago noted a significant increase in empirical papers across nine bioethics journals. This study provides an update on the presence of empirical papers in the same nine journals. It first evaluates whether the empirical trend is continuing as noted in the previous study, and second, how it is changing, that is, what are the characteristics of the empirical works published in these nine bioethics journals. A review of the same nine journals was conducted (...) for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. Of the total number of original papers published in the nine bioethics journals, 18.1% collected and analysed empirical data. Journal of Medical Ethics and Nursing Ethics led the empirical publications, accounting for 89.4% of all empirical papers. The former published significantly more quantitative papers than qualitative, whereas the latter published more qualitative papers. Our analysis reveals no significant difference between the proportion of empirical papers published in 2004–2009 and 2010–2015. However, the increasing empirical trend has continued in these journals with the proportion of empirical papers increasing from 14.9% in 2004 to 17.8% in 2015. This study presents the current state of affairs regarding empirical research published nine bioethics journals. In the quarter century of data that is available about the nine bioethics journals studied in two reviews, the proportion of empirical publications continues to increase, signifying a trend towards empirical research in bioethics. The growing volume is mainly attributable to two journals: Journal of Medical Ethics and Nursing Ethics. This descriptive study further maps the still developing field of empirical research in bioethics. Additional studies are needed to completely map the nature and extent of empirical research in bioethics to inform the ongoing debate about the value of empirical research for bioethics. (shrink)

Non-Invasive Prenatal Testing is a technology which provides information about fetal genetic characteristics very early in pregnancy by examining fetal DNA obtained from a sample of maternal blood. NIPT is a morally complex technology that has advanced quickly to market with a strong push from industry developers, leaving many areas of uncertainty still to be resolved, and creating a strong need for health policy that reflects women’s social and ethical values. We approach the need for ethical policy-making by studying the (...) use of NIPT and emerging policy in the province of Ontario, Canada. Using an adapted version of constructivist grounded theory, we conducted interviews with 38 women who have had personal experiences with NIPT. We used an iterative process of data collection and analysis and a staged coding strategy to conduct a descriptive analysis of ethics issues identified implicitly and explicitly by women who have been affected by this technology. The findings of this paper focus on current ethical issues for women seeking NIPT, including place in the prenatal pathway, health care provider counselling about the test, industry influence on the diffusion of NIPT, consequences of availability of test results. Other issues gain relevance in the context of future policy decisions regarding NIPT, including funding of NIPT and principles that may govern the expansion of the scope of NIPT. These findings are not an exhaustive list of all the potential ethical issues related to NIPT, but rather a representation of the issues which concern women who have personal experience with this test. Women who have had personal experience with NIPT have concerns and priorities which sometimes contrast dramatically with the theoretical ethics literature. These findings suggest the importance of engaging patients in ethical deliberation about morally complex technologies, and point to the need for more deliberative patient engagement work in this area. (shrink)

In vitro fertilisation is now an established technique for treating some forms of infertility, yet it remains ethically controversial. New developments, such as embryo donation and embryo freezing, have led to further discussion. We briefly discuss the ethical aspects of IVF, focusing on the issues of resource allocation, the 'unnaturalness' of the procedure, the moral status of the embryo, surrogate motherhood, and restrictions on access to IVF. We argue that, on the whole, IVF is an ethically justifiable method of assisting (...) infertile couples. (shrink)

Many publicly-funded health systems apply cost-benefit frameworks in response to the moral dilemma of how best to allocate scarce healthcare resources. However, implementation of recommendations based on costs and benefit calculations and subsequent challenges have led to ‘special cases’ with certain types of health benefits considered more valuable than others. Recent debate and research has focused on the relative value of life extensions for people with terminal illnesses. This research investigates societal perspectives in relation to this issue, in the UK.

BackgroundEgg donor agencies are increasingly being used as part of IVF in the US, but are essentially unregulated, posing critical ethical and policy questions concerning how providers view and use them, and what the implications might be.MethodsThirty-seven in-depth interviews of approximately 1 h were conducted – with 27 IVF providers and 10 patients.ResultsClinicians vary in their views and interactions concerning egg donor agencies, ranging widely in whether and how often they use agencies. Agencies may offer egg recipients increased choices, but (...) raise ethical and other concerns regarding respect for donors as individuals, potential harms, justice, and donors constituting a vulnerable group. The quality of agencies appears to vary considerably, from acceptable to problematic. Agencies’ medical and psychological screenings of donors can range, and be minimal. Not all agencies adequately track donors’ prior numbers of donations, or share the relevant records with clinics. Clinics may find that potential donors have genetic mutations and medical problems about which they were unaware. Yet agencies and clinics do not provide care for such donors, generating stress. Dissemination of donors’ personal data can potentially threaten confidentiality. Questions emerge of whether increased monitoring/oversight of agencies may be beneficial.ConclusionsThese data, the first to examine providers’ views and interactions regarding egg donor agencies, suggest wide variations in quality and use of agencies, and have critical implications for practice, policy, education and research. Given the potential limitations of the current model of self-regulation of agencies, the present data suggest needs to consider stronger professional guidelines or possible governmental regulations to establish, require and enforce higher standards for agencies to follow, regarding advertising to potential donors and recipients, arranging for appropriate informed consent concerning risks and benefits involved, and for quality control. Appropriate informed consent should be obtained from potential egg donors, including the fact that they may learn about mutations or medical problems about which they were unaware, but for which they will not receive treatment as part of this process. Enhancing understanding among the public-at-large about what egg donation entails may also be helpful. (shrink)

This article describes the relatively new technology of freezing human eggs and examines whether egg freezing, specifically when it is used by healthy women as 'insurance' against age-related infertility, is a legitimate exercise of reproductive autonomy. Although egg freezing has the potential to expand women's reproductive options and thus may represent a breakthrough for reproductive autonomy, I argue that without adequate information about likely outcomes and risks, women may be choosing to freeze their eggs in a commercially exploitative context, thus (...) undermining rather than expanding reproductive autonomy. (shrink)

Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better. Respondents in 90 family pairs rank-ordered 47 end-of-life statements as life-story narrative measure and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view and predicted pair’s view. They also scored their confidence in (...) surrogate’s decision-making and familiarity with pair’s healthcare-preferences. Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts and between respondent-surrogate and pair-personal Q-sorts before and after controlling for correlation with respondent-personal scores, and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity. Mean age was 35.4 years, 69% were females, and 73 and 80% reported ≥ very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 and 75% were ≥ familiar with pair’s healthcare-preferences. Mean projection, simulation, and adjusted-simulation correlations were 0.68, 0.42, and 0.26, respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score. There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts and percent agreement on healthcare-outcomes acceptability. Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background. (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)

In Western countries, a social trend toward delaying childbearing has been observed in women of reproductive age for the last two decades. This delay is due to different factors related to lifestyle, such as the development of a professional career or the absence of the right partner. As a consequence, women who defer childbearing may find themselves affected by age-related infertility when they decide to conceive. Fertility preservation techniques are, therefore, proposed as a solution for these women. Among all possible (...) solutions, social freezing is an alternative strongly discussed from a scientific, social and ethical point of view.A survey among 930 female students at the University of Padova (Italy) investigated their knowledge and attitudes on social egg freezing and their potential intentions regarding this procedure. To our knowledge, this is the first study to examine the level of awareness of age-related infertility in Italian young women and their attitudes regarding acceptable indications for elective oocyte freezing, their potential personal use, the circumstances in which they would then decide to use cryopreserved eggs, and their attitudes towards cost coverage and oocyte donation.Data collected in this study revealed some important points about young women and their knowledge about social oocyte freezing in Italy as compared to other European countries and the United States.Overall, 34.3% of the students reported having heard about the possibility of oocyte cryopreservation for non-medical reasons and being aware of the meaning of this procedure; only 19.5% were in favour of social egg freezing and 48.4% thought that the cost for this procedure should be borne entirely by the woman herself. Regarding egg donation, the majority of students (64.9%) would not accept donating their eggs to a known woman or couple and 42.5% would instead accept donating to a biobank.Our study shows that young Italian women are significantly less aware of age-related decline in fertility and the possibility of using social egg freezing compared to their similarly situated counterparts in other Western countries. (shrink)

Since its origin, bioethics has attracted the collaboration of few social scientists, and social scientific methods of gathering empirical data have remained unfamiliar to ethicists. Recently, however, the clouded relations between the empirical and normative perspectives on bioethics appear to be changing. Three reasons explain why there was no easy and consistent input of empirical evidence into bioethics. Firstly, interdisciplinary dialogue runs the risk of communication problems and divergent objectives. Secondly, the social sciences were absent partners since the beginning of (...) bioethics. Thirdly, the meta‐ethical distinction between ‘is’ and ‘ought’ created a ‘natural’ border between the disciplines. Now, bioethics tends to accommodate more empirical research. Three hypotheses explain this emergence. Firstly, dissatisfaction with a foundationalist interpretation of applied ethics created a stimulus to incorporate empirical research in bioethics. Secondly, clinical ethicists became engaged in empirical research due to their strong integration in the medical setting. Thirdly, the rise of the evidence‐based paradigm had an influence on the practice of bioethics. However, a problematic relationship cannot simply and easily evolve into a perfect interaction. A new and positive climate for empirical approaches has arisen, but the original difficulties have not disappeared. (shrink)