Another "turn" in bioethics? A plea for methodological continuity.

A growing trend in bioethics highlights the importance of using big data science methods to advance normative insight. This has been called the "digital turn" in bioethics by Salloch and Ursin. Automated data processing can, for example, detect significant patterns of correlation that have escaped the attention of human scholars. Although we agree that such technological innovations could bolster existing methods in empirical bioethics (EB), we argue that it should not be conceptualized as a new turn but rather as a revivification, and possibly an amplification of entrenched debates in EB. We begin by highlighting some convergences between EB and digital bioethics that Salloch and Ursin seem to categorize as fundamental differences and end up with elaborating on some risks related to the integration of empirical findings with normative (philosophical) analysis in the digitalization trend.

'A radical operation' - a thematic analysis of newspaper framing of bariatric surgery in adolescents.

BACKGROUND: Obesity in adolescents is a growing public health issue. Bariatric surgery is an effective, yet controversial treatment option for adolescents. The moral acceptability of this procedure by health-care professionals as well as the general public can be influenced by its portrayal in the news media. Our objective was to analyze how newspaper articles portrayed adolescent bariatric surgery, with attention to the language used and moral arguments made. METHODS: Using an inductive thematic analysis approach, we analyzed 26 UK and 12 US newspaper articles (2014-2022) on adolescent bariatric surgery for implicit or explicit moral evaluations and use of normative language. Coding was performed after immersive reading, assisted by NVivo. Themes were identified and refined iteratively through consecutive auditing cycles to enrich the depth and rigor of our analysis. RESULTS: The major themes identified related to (1) defining the burden of adolescent obesity, (2) sparking moral outrage, (3) sensation-seeking, and (4) raising ethical issues. The articles employed moral language, specifically non-neutral and negative discourse regarding surgery. Blame was attributed to adolescents or their parents. Sensationalist wording often reinforced the normative content, drawing the attention of the reader and contributing to stigmatization of adolescents with severe obesity as lacking will power and being lazy. Further moral issues that stood out were the challenges in obtaining an informed consent, and the unequal access to surgery for socially disadvantaged groups. CONCLUSIONS: Our findings provide insights into how adolescent bariatric surgery is represented in the print news media. Despite frequent citing of experts and studies on the efficacy, safety and unmet need for bariatric surgery, obesity and surgery in adolescents are often stigmatized and sensationalized, with (prospective) patients depicted as looking for an easy way out in the form of a solution brought by others (health systems, society, tax payers). This may increase the stigma surrounding adolescent obesity, and therefore limit the acceptability of specific treatments such as bariatric surgery.

Egg donation in the age of vitrification: A study of egg providers' perceptions and experiences in the UK, Belgium and Spain.

IVF treatment involving donated eggs increases yearly. Numerous technical and commercial transformations have reshaped how eggs are retrieved, stored and managed. A key transformation is vitrification; a 'fast freezing' method that allows efficient preservation of eggs, and therefore more flexibility in use, giving rise to new commercial possibilities. There has been limited focus on egg providers' experiences in the context of vitrification and related commercialisation. We report findings from a study in the UK, Spain and Belgium, where we interviewed 75 egg providers. Comparing experiences within different donation 'regimes' allows an exploration of how varying national practices and policies shape information-giving and women's experiences. In the UK, a system of 'informed gift-giving' was described, where egg providers saw their actions as not-for-profit and felt relatively well informed. In Belgium, the system was presented as 'trusted tissue exchange': with less information-giving than in the UK, but clinics were trusted to act responsibly. In Spain, a 'closed-door, market-driven' system was described, whereby egg providers received little information and expressed concerns about generation of excess profit. Our findings extend understandings of how egg donation is managed at the national level and how donation regimes produce specific experiences, expectations and subjectivities amongst tissue providers.

"It was not an accident": Women's experiences of renewing motherhood at 40.

In recent decades, there has been an increase in motherhood at an advanced age that has raised several medical and social concerns. We conducted a qualitative interview study, guided by Interpretative Phenomenological Analysis, to focus on the motivations and experiences of Belgian women who 'renewed' their motherhood later in life, meaning they had one or several children and then (at least 10 years later) had another child at the age of 40 or older. We focused on ten women's experiences of motherhood later in life, as well as on the way they managed social norms and expectations regarding family building and the appropriate life course. We identified two main themes. The first theme describes the participants' encounters with social norms that challenged their decision to reproduce and parent later in life, and how they managed and anticipated criticism, surprise, disbelief and incomprehension about their renewed motherhood in various ways. The second theme shows how these women talked about taking responsibility as a (renewed) mother of advanced age. For them, responsible motherhood involved making thoughtful reproductive choices, attending to the range of needs of their children, and making extra efforts to safeguard the social and emotional wellbeing of their youngest children, thereby seeking to reduce potential harm resulting from these reproductive choices. This study provides insight into these women's self-conception and their interactions with prejudiced social views of motherhood and family building.

Beyond individualisation: towards a more contextualised understanding of women's social egg freezing experiences.

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.

Acceptable objectives of empirical research in bioethics: a qualitative exploration of researchers' views.

BACKGROUND: This 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. METHODS: Using 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. RESULTS: From 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. CONCLUSIONS: Our 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.

'I feel that injustice is being done to me': a qualitative study of women's viewpoints on the (lack of) reimbursement for social egg freezing.

BACKGROUND: During 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. METHODS: To 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. RESULTS: We 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. CONCLUSIONS: This 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.

'Nothing will stop me from giving the gift of life': a qualitative analysis of egg donor forum posts.

Online spaces are increasingly important for our collective consciousness and provide an opportunity to document changing ideas, subjectivities and experiences surrounding new reproductive technologies. This paper reports on the first study of egg donation and online discussion boards in UK-based forums. Using thematic analysis, we investigated how donors use online forums and explored how they present themselves as possible donors in online spaces. Three major themes were identified: 'using online forums to exchange knowledge and experiences', 'egg donation as a gift' and 'having a drive to donate'. Findings from the study reveal how donors enter online spaces looking for advice, presenting themselves as available and weaving themselves into an online community. There exist multiple ways in which donors construct and narrate their own participation in the process of egg donation. Presenting a donor identity in these online forums is not a straightforward matter of helping by giving but also involves a specific drive. While more research is needed on the range of possible motivations, this study gives a better understanding of the available online information and the co-construction of donor identities on discussions boards.

Evaluating risk, safety and efficacy of novel reproductive techniques and therapies through the EuroGTP II risk assessment tool.

STUDY QUESTION: Can risks associated with novelties in assisted reproduction technologies (ARTs) be assessed in a systematic and structured way? SUMMARY ANSWER: An ART-specific risk assessment tool has been developed to assess the risks associated with the development of novelties in ART (EuroGTP II-ART). WHAT IS KNOWN ALREADY: How to implement new technologies in ART is well-described in the literature. The successive steps should include testing in animal models, executing pre-clinical studies using supernumerary gametes or embryos, prospective clinical trials and finally, short- and long-term follow-up studies on the health of the offspring. A framework categorizing treatments from experimental through innovative to established according to the extent of the studies conducted has been devised. However, a systematic and standardized methodology to facilitate risk evaluation before innovations are performed in a clinical setting is lacking. STUDY DESIGN, SIZE, DURATION: The EuroGTP II-ART risk assessment tool was developed on the basis of a generic risk assessment algorithm developed for tissue and cell therapies and products (TCTPs) in the context of the project 'Good Practices for demonstrating safety and quality through recipient follow-up European Good Tissue and cells Practices II (EuroGTP II)'. For this purpose, a series of four meetings was held in which eight ART experts participated. In addition, several tests and simulations were undertaken to fine-tune the final tool. PARTICIPANTS/MATERIALS, SETTING, METHODS: The three steps comprising the EuroGTP II methodology were evaluated against its usefulness and applicability in ART. Ways to improve and adapt the methodology into ART risk assessment were agreed and implemented. MAIN RESULTS AND THE ROLE OF CHANCE: Assessment of the novelty (Step 1), consisting of seven questions, is the same as for other TCTPs. Practical examples were included for better understanding. Identification of potential risks and consequences (Step 2), consisting of a series of risks and risk consequences to consider during risk assessment, was adapted from the generic methodology, adding more potential risks for processes involving gonadic tissues. The algorithm to score risks was also adapted, giving a specific range of highest possible risk scores. A list of strategies for risk reduction and definition of extended studies required to ensure effectiveness and safety (Step 3) was also produced by the ART experts, based on generic EuroGTP II methodology. Several explanations and examples were provided for each of the steps for better understanding within this field. LIMITATIONS, REASONS FOR CAUTION: A multidisciplinary team is needed to perform risk assessment, to interpret results and to determine risk mitigation strategies and/or next steps required to ensure the safety in the clinical use of novelties. WIDER IMPLICATIONS OF THE FINDINGS: This is a dynamic tool whose value goes beyond assessment of risk before implementing a novel ART in clinical practice, to re-evaluate risks based on information collected during the process. STUDY FUNDING / COMPETING INTEREST(S): This study was called EUROGTP II and was funded by the European Commission (Grant agreement number 709567). The authors declare no competing interests concerning the results of this study.

Donor insemination disclosure in social networks: heterosexual couples' experiences.

The way in which heterosexual couples manage information about infertility and donor insemination within their social networks has not yet been explored in-depth. This study focuses on how parents and aspiring parents manage information about infertility and donor insemination within their social networks. Fifteen Belgian couples were interviewed as part of a parenthood research project. Thematic analysis resulted in the identification of four themes. The first of these reveals how the social context can best be understood as a continuous confrontation with social expectations. A second theme highlights the diverse ways in which couples manage personal information in this confronting context. The third theme stresses how couples manage information about donor insemination so as to be treated as a 'normal' family. The final theme shows how emotional regulation within the context of the extended family plays a role in couples' decisions about how to manage information with relatives. Results are analysed using the concept of 'systemic emotion management' and the importance of being seen by others as a 'normal' family. Study findings signal the importance of managing information within social networks and are of relevance to a range of practitioners.

The attitude of female students towards sperm donation by their partner.

PURPOSE: The aim of this study is to assess the attitude of heterosexual female students towards sperm donation by their partners and towards sperm donation in general. METHODS: The method is an online anonymous survey of 1525 female students. RESULTS: The majority of the women had a positive attitude towards sperm donation in general, but only 37% would support their partner if he would want to donate. The highest barriers to accepting donation by their partner were the fact that he would have one or more children that she would not know (55.8%) and the chance that he would be traced by his donor offspring (58.9%). There was a significant difference between the general attitude towards sperm donation as a fertility treatment and the attitude towards sperm donation by the partner. CONCLUSIONS: Men rightly worry about their partner or future partner when they donated or consider donating sperm. Only about one in three women would support their partner if he would want to donate. The majority of women perceived sperm donation by their partner as an act that also concerns them and believed that they should be heard in this decision. To promote full informed consent, the relational component should be included in counselling donors, not only regarding the present but also regarding the (possible) future partner.

An update on the "empirical turn" in bioethics: analysis of empirical research in nine bioethics journals.

BACKGROUND: 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. METHOD: A review of the same nine journals (Bioethics; Journal of Medical Ethics; Journal of Clinical Ethics; Nursing Ethics; Cambridge Quarterly of Healthcare Ethics; Hastings Center Report; Theoretical Medicine and Bioethics; Christian Bioethics; and Kennedy Institute of Ethics Journal) was conducted for a 12-year period from 2004 to 2015. Data obtained was analysed descriptively and using a non-parametric Chi-square test. RESULTS: Of the total number of original papers (N = 5567) published in the nine bioethics journals, 18.1% (n = 1007) 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 (χ2 = 2.857; p = 0.091) 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. CONCLUSIONS: 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.

Standards of practice in empirical bioethics research: towards a consensus.

BACKGROUND: This paper reports the process and outcome of a consensus finding project, which began with a meeting at the Brocher Foundation in May 2015. The project sought to generate and reach consensus on standards of practice for Empirical Bioethics research. The project involved 16 academics from 5 different European Countries, with a range of disciplinary backgrounds. METHODS: The consensus process used a modified Delphi approach. RESULTS: Consensus was reached on 15 standards of practice, organised into 6 domains of research practice (Aims, Questions, Integration, Conduct of Empirical Work, Conduct of Normative Work; Training & Expertise). CONCLUSIONS: Through articulating these standards we outline a position that encourages responses, and through those responses we will be able to identify points of agreement and contestation that will drive the conversation forward. In that vein, we would encourage researchers, funders and journals to engage with what we have proposed, and respond to us, so that our community of practice of empirical bioethics research can develop and evolve further.

'No daddy', 'A kind of daddy': words used by donor conceived children and (aspiring) parents to refer to the sperm donor.

Research has shown that the recipients of donor sperm can experience difficulties finding appropriate language to refer to the donor. Based on two qualitative analysis techniques, namely word count and empirical discourse analysis, we studied the words used to refer to the donor in heterosexual and lesbian (aspiring) parents and in donor conceived children. Findings show that the words used in these households are highly diverse and have at least four different interlinked functions: (1) to position the donor in relation to the nuclear family; (2) to safeguard the role of the social parent; (3) to clarify family structure; and (4) to present a positive picture of the donor. Both parents and children consciously reflect on what words to use to refer to the donor. Although parents try to keep words like 'father' and 'daddy' out of the family narrative, children use these words. These findings show that it is important for healthcare personnel and policy makers to reflect on the careful use of terminology when they address questions around sperm donation because the terminology invokes specific meanings that have an effect on how the recipients and their children perceive the role of the donor.

Non-donors' attitudes towards sperm donation and their willingness to donate.

PURPOSE: The aim of this article is to study attitudes about sperm donation and willingness to donate sperm in students who have never shown an interest in sperm donation. METHODS: The method used in this study is an electronic survey of 1012 male students. RESULTS: Only one third of the respondents (34.3%) would consider donating sperm. Overall, 85.7% indicated a positive attitude towards sperm donation while 14.3% indicated a neutral or negative attitude. The highest scored barriers to donating were the lack of practical information and the fear that the partner would not agree. Almost 40% of the respondents feared that the donation might have a negative impact on their current or future relationship. The majority (83.6%) of those who considered donating thought donors should receive a financial compensation. Money was also one of the main motivators. CONCLUSIONS: About 85% of the students thought positively about sperm donation but several factors such as perceived negative views by the social environment, especially the partner, may deter students from donating. This study indicates that the effect of strong incentives, for instance in monetary terms, on a donor pool consisting of students could be limited and that relational factors and donor's perceptions of the views of the wider social network should be taken into account when recruiting donors.

Dealing with treatment and transfer requests: how PGD-professionals discuss ethical challenges arising in everyday practice.

How do professionals working in pre-implantation genetic diagnosis (PGD) 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 (The Netherlands) with PGD-professionals from Dutch PGD-centres and one in Prague (Czech Republic) with PGD-professionals working in centres in different European countries. Both meetings consisted of two parts, exploring participants' views regarding (1) treatment requests for conditions that may not fulfill traditional indications criteria for PGD, and (2) 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 (whatever the views of the professional), 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.

Constructing and enacting kinship in sister-to-sister egg donation families: a multi-family member interview study.

Although intra-familial egg donation has been practiced for more than 15 years in several countries, little is known about family relationships in this family type. Framed within the new kinship studies, this article focuses on the experiential dimension of kinship in sister-to-sister egg donation families: how is kinship 'unpacked' and 'reconstructed' in this specific family constellation? Qualitative data analysis of interviews with receiving parents, their donating sisters and the donor children revealed six themes: (1) being connected as an extended family; (2) disambiguating motherhood; (3) giving and receiving as structuring processes; (4) acknowledging and managing the 'special' link between donor and child; (5) making sense of the union between father and donor; and (6) kinship constructions being challenged. This study showed the complex and continuous balancing of meanings related to the mother-child dyad, the donor-child dyad and the donor-father dyad. What stood out was the complexity of, on the one hand cherishing the genetic link with the child allowed by the sisters' egg donation, while, on the other, managing the meanings related to this link, by, for instance, acknowledging, downsizing, symbolising, and differentiating it from the mother-child bond. (A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).

The use of empirical research in bioethics: a survey of researchers in twelve European countries.

BACKGROUND: 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 if so, what methods), and whether (and how) they have made attempts at integrating the empirical and the normative. METHODS: 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. RESULTS: Most respondents (n = 175; 87.5%) indicated that they use or have used empirical methods in their work. A similar proportion of respondents (61.0% and 59.0%) reported having had at least some training in qualitative or quantitative methods, respectively. Among the 'empirical researchers', more than a fifth (22.9%) had not received any methodological training. It appears that only 6% or less of the 'empirical researchers' considered themselves experts in the methods (qualitative or quantitative) 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. CONCLUSIONS: 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.

The Meaning of the Sperm Donor for Heterosexual Couples: Confirming the Position of the Father.

In the literature, relatively little attention has been paid to the meaning of donor involvement in the intimate couple dyad. The current study aimed to enrich our understanding of couples' meaning-making regarding the anonymous sperm donor and how they dealt with the donor involvement. Semi-structured interviews were conducted with nine couples, who had at least one child conceived through sperm donation. Our thematic analysis showed that the donor conception was seen as a different path to create a normal family. Once the family was formed, most couples avoided talking about the donor because it was perceived as disrupting men's growing confidence in their position as father. Participants tried to confirm the position of the father to protect the family relationships. Uncertainties about how they were perceived as parents showed the continuing dominance of genetic ties within our social discourse. Participants also dealt with reminders of the donor in their daily life. Overall, they tried to manage the space taken up by the donor and to protect the position of the father. We relate our findings to literature on topic avoidance and shared obliviousness in families. For counseling practice, it could be useful to explore couples' meaning-making about the donor as this seemed to serve family functioning.