This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (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)

The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the ‘empirical turn of bioethics’ and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this integration of the normative and the empirical can be achieved. The aim of this paper is to describe the attitudes of bioethics researchers in this field towards the use of empirical research, (...) and examine their actual conduct: whether they use empirical research methods, and whether they have made attempts at integrating the empirical and the normative. An anonymous online survey was conducted to reach scholars working in bioethics/biomedical ethics/ethics institutes or centers in 12 European countries. A total of 225 bioethics researchers participated in the study. Of those, 200 questionnaires were fully completed, representing a response rate of 42.6%. The results were analysed using descriptive statistics. Most respondents indicated that they use or have used empirical methods in their work. A similar proportion of respondents reported having had at least some training in qualitative or quantitative methods, respectively. Among the ‘empirical researchers’, more than a fifth had not received any methodological training. It appears that only 6% or less of the ‘empirical researchers’ considered themselves experts in the methods that they have used. Only 35% of the scholars who have used empirical methods reported having integrated empirical data with normative analysis, whereas for their current projects, 59.8% plan to do so. There is a need to evaluate the current educational programs in bioethics and to implement rigorous training in empirical research methods to ensure that ‘empirical researchers’ have the necessary skills to conduct their empirical research in bioethics. Also imperative is clear guidance on the integration of the normative and the empirical so that researchers who plan to do so have necessary tools and competences to fulfil their goals. (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)

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)

Policies that determine whether someone is allowed access to reproductive healthcare or not vary widely among countries, especially in their age requirements. This raises the suspicion of arbitrariness, especially because often no underlying justification is provided. In this article, we pose the question—under which circumstances is it morally acceptable to use age for policy and legislation in the first place? We start from the notion that everyone has a _conditional positive_ right to fertility treatment. Subsequently, we set off to formulate (...) a framework that helps to determine who should be excluded from treatment nonetheless. The framework’s three core elements are: choosing and ethically justifying exclusion criteria (target), determining the actual limit between in- and exclusion (cut-off), and selecting variables that help to predict the exclusion criteria via correlation (as they are not directly measurable) (proxy). This framework allows us to show that referring to age in policy and legislation is only ethically justifiable if there is a sufficiently strong correlation with a non-directly measurable exclusion criterion. Moreover, since age is only one of many predicting variables, it should therefore not be ascribed any special status. Finally, our framework may be used as an argumentative scheme to critically assess the ethical legitimacy of policies that regulate access to (fertility) treatments in general. (shrink)

Over the past years, a growing number of countries have legislated open-identity donation, in which donor-conceived offspring are given access to the donor’s identity once the child has reached maturity. It is held that donor anonymity creates identity problems for such children similar to the “genealogical bewilderment” described within the adoption context. The study of the social and psychological effects of open-identity donation is still very much in its infancy, but what has been left unquestioned is whether offering access to (...) the donor’s name and address is an adequate response to such effects. This study has two goals: First, we aim to provide a systematic review of the reasons why donor-conceived offspring want to know the identity of their sperm donor. Second, we examine to what extent the provision of donor-identifying information can satisfy the reasons mentioned. The most important motivations appear to be: to avoid medical risks and consanguineous relationships; to satisfy curiosity; to learn more about the self or to complete one’s identity; to learn more about what kind of person the donor is ; to form a relationship with the donor and/or his family; and to learn about one’s ancestry/genealogy. Our analysis shows that for nearly all of these reasons access to the donor’s identity is not necessary. In those cases where it is, moreover, donor identification is not sufficient. What is really needed is contact with the donor, rather than the mere provision of his name. (shrink)

BackgroundThis is the first qualitative study to investigate how researchers, who do empirical work in bioethics, relate to objectives of empirical research in bioethics (ERiB). We explore reasons that make some objectives more acceptable, while others are deemed less acceptable.MethodsUsing qualitative exploratory study design, we interviewed bioethics researchers, who were selected to represent different types of scholars working in the field. The interview data of 25 participants were analyzed in this paper using thematic analysis. ResultsFrom the eight objectives presented to (...) the study participants, understanding the context of a bioethical issue and identifying ethical issues in practice received unanimous agreement. Participants also supported other objectives of ERiB but with varying degrees of agreement. The most contested objectives were striving to draw normative recommendations and developing and justifying moral principles. The is-ought gap was not considered an obstacle to ERiB, but rather a warning sign to critically reflect on the normative implications of empirical results.ConclusionsOur results show that the most contested objectives are also the more ambitious ones, whereas the least contested ones focus on producing empirical results. The potential of empirical research to be useful for bioethics was mostly based on the reasoning pattern that empirical data can provide a testing ground for elements of normative theory. Even though empirical research can inform many parts of bioethical inquiry, normative expertise is recommended to guide ERiB. The acceptability of ambitious objectives for ERiB boils down to finding firm ground for the integration of empirical facts in normative inquiry. (shrink)

The integration of normative analysis with empirical data often remains unclear despite the availability of many empirical bioethics methodologies. This paper sought bioethics scholars’ experiences and reflections of doing empirical bioethics research to feed these practical insights into the debate on methods. We interviewed twenty-six participants who revealed their process of integrating the normative and the empirical. From the analysis of the data, we first used the themes to identify the methodological content. That is, we show participants’ use of familiar (...) methods explained as “back-and-forth” methods (reflective equilibrium), followed by dialogical methods where collaboration was seen as a better way of doing integration. Thereafter, we highlight methods that were deemed as inherent integration approaches, where the normative and the empirical were intertwined from the start of the research project. Second, we used the themes to express not only how we interpreted what was said but also how things were said. In this, we describe an air of uncertainty and overall vagueness that surrounded the above methods. We conclude that the indeterminacy of integration methods is a double-edged sword. It allows for flexibility but also risks obscuring a lack of understanding of the theoretical-methodological underpinnings of empirical bioethics research methods. (shrink)

Background Reasonable disagreement about the role awarded to gamete donors in decision-making on the use of embryos created by gamete donation for research purposes emphasises the importance of considering the implementation of participatory, adaptive, and trustworthy policies and guidelines for consent procedures. However, the perspectives of gamete donors and recipients about decision-making regarding research with EGDs are still under-researched, which precludes the development of policies and guidelines informed by evidence. This study seeks to explore the views of donors and recipients (...) about who should take part in consent processes for the use of EGDs in research. Methods From July 2017 to June 2018, 72 gamete donors and 175 recipients completed a self-report structured questionnaire at the Portuguese Public Bank of Gametes. Agreement with dual consent was defined as the belief that the use of EGDs in research should be consented by both donors and recipients. Results The majority of participants were willing to donate embryos for research. Almost half of the donors and half of the recipients considered that a dual consent procedure is desirable. This view was more frequent among employed recipients than among non-employed. Donors were less likely to believe that only recipients should be involved in giving consent for the use of EGDs in research and were more frequently favourable to the idea of exclusive donors’ consent. Conclusions Divergent views on dual consent among donors and recipients indicate the need to develop evidence-based and ethically sustainable policies and guidelines to protect well-being, autonomy and reproductive rights of both stakeholder groups. More empirical research and further theoretical normative analyses are needed to inform people-centred policy and guidelines for shared decision-making concerning the use of EGDs for research. (shrink)

How do professionals working in pre-implantation genetic diagnosis reflect upon their decision making with regard to ethical challenges arising in everyday practice? Two focus group discussions were held with staff of reproductive genetic clinics: one in Utrecht with PGD-professionals from Dutch PGD-centres and one in Prague with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants’ views regarding treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and treatment and (...) transfer requests involving welfare-of-the-child considerations. There was general support for the view that people who come for PGD will have their own good reasons to consider the condition they wish to avoid as serious. But whereas PGD-professionals in the international group tended to stress the applicants’ legal right to eventually have the treatment they want, participants in the Dutch group sketched a picture of shared decision-making, where professionals would go ahead with treatment in cases where they are able to understand the reasonableness of the request in the light of the couple’s reproductive history or family experience. In the international focus group there was little support for guidance stating that welfare-of-the child considerations should be taken into account. This was different in the Dutch focus group, where shared decision-making also had the role of reassuring professionals that applicants had adequately considered possible implications for the welfare of the child. (shrink)

BackgroundDuring the last decade, the possibility for women to cryopreserve oocytes in anticipation of age-related fertility loss, also referred to as social egg freezing, has become an established practice at fertility clinics around the globe. In Europe, there is extensive variation in the costs for this procedure, with the common denominator that there are almost no funding arrangements or reimbursement policies. This is the first qualitative study that specifically explores viewpoints on the (lack of) reimbursement for women who had considered (...) to uptake at least one social egg freezing cycle in Belgium.MethodsTo understand the moral considerations of these women, drawing from twenty-one interviews, this paper integrates elements of a symbiotic empirical ethics approach and thematic analysis.ResultsWe identify four themes: (1) being confronted with unclear information; (2) financial costs as ongoing concern; (3) necessity of coverage; (4) extent of reimbursement. In the first theme, we found that some women were concerned about the lack of clear information about the cost of social egg freezing. In the second theme, we report moral sentiments of injustice and discrimination which some women attributed to their struggles and needs not being recognised. The third theme illustrates diverse views on reimbursement, ranging from viewing social egg freezing as an elective treatment not appropriate for reimbursement to preferences for greater public responsibility and wider access. Finally, we describe the participants’ varying proposals for partial reimbursement and the idea that it should not be made available for free.ConclusionsThis research adds important empirical insights to the bioethics debate on social egg freezing, in particular by presenting (potential) users’ views on the lack of reimbursement. While there is much more to say about the ethical and political complexities of the reimbursement of this procedure, our study highlighted the voices of (potential) users and showed that at least some of them would welcome the coverage of SEF through the public healthcare insurance. (shrink)