Age-based restrictions on reproductive care: discerning the arbitrary from the necessary.

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.

An invisible caregiver for visibly older parents: Experiences of (young) adults shared as comments to newspaper articles on advanced age parenthood.

At the centre of the debate on advanced age parenthood are concerns for the offspring's well-being. In the few empirical studies available, researchers found that children born to older parents show similar or better cognitive, behavioural and psychosocial outcomes compared to children born to younger parents. Most of these studies examining the children's perspective are quantitative. This study qualitatively examined the experiences presented by (young) adults who identified as born to older parents offered in response to a selection of newspaper articles on the topic. Performing inductive thematic analysis, we found that positive experiences were often presented as a way to contradict prejudices about advanced age parenthood. Other comments described the visual representation of the older parents' age as an attribute that created difference and, in some cases, social distance from peers and the outside world in general. Central to the negative experiences was a contrast between the visibility of being a child of older parents and the invisibility of caring for them. Moreover, in a majority of the latter comments, the commenters' caregiving experiences combined with the social network's notable lack of understanding and support regarding the caregiving responsibilities were described as adversely affecting their lives. These findings provide more insight into the experiences of (young) adults born to advanced age parents and their potential needs.

"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.

'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.

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.

From scarcity to sisterhood: The framing of egg donation on fertility clinic websites in the UK, Belgium and Spain.

The use of third-party eggs now forms an integral part of a global reproductive bioeconomy. In order to meet clinics' growing need for donors, they employ a range of recruitment strategies including adverts for donors via their publicly facing websites. Such websites are also key sites for the articulation and popularisation of culturally specific narratives about egg donation and are therefore a rich source of data regarding the social, cultural and economic framing of bodily donation. Drawing on conceptualisations from literature on blood, organ and tissue donation we focus attention on what we refer to as egg donation 'recruitment regimes'; exploring how nationally situated recruitment and marketing strategies are used by fertility clinics to frame ideas about egg donation. We use frame analysis to analyse 62 clinic websites in the UK, Spain and Belgium, connecting the framing of egg donation to the regulatory context of each country. Our data show that altruism and solidarity are dominant frames that underpin the supranational framing of egg provision within the EU. However, there are also important nationally specific differences that both reflect and produce different versions of egg donation. We describe three distinct and nationally specific 'recruitment regimes' which articulate different versions of egg donation: a 'scarce gift with enduring responsibility' in the UK, 'disconnected tissue exchange' in Belgium and 'mutually beneficial sisterhood' in Spain. These regimes contribute towards public imaginaries and shape egg donation as a social practice by creating opportunities for (some) women to give eggs in specific ways. These representations illustrate the complex entanglements of national policy, supranational regulation, cultural preferences and commercial priorities within the fertility treatment landscape.

Enthusiasm, concern and ambivalence in the Belgian public's attitude towards in-vitro gametogenesis.

Given the controversial nature of research into in-vitro gametogenesis (IVG), this study set out to investigate the current attitudes towards IVG in the general Belgian population in order to anticipate potential future barriers and misunderstandings. A questionnaire was developed and incorporated into a web-based online survey and sent out to Belgians aged ≥ 18 years in September 2018 until a representative sample (by age, gender and region) of 1000 participants was reached. Respondents expressed an overall positive attitude towards IVG and its possible future applications, with the exception of the use of IVG in postmenopausal women. They were ambivalent about the importance of genetic parenthood and about the necessary experiments on animals and embryos to bring IVG to the clinic. While the willingness to accept greater risks for IVG than for other assisted reproductive technology treatments was low (17.5%), the use of spare in-vitro fertilization embryos to study those risks was acceptable for 55.8% of participants; embryo creation was acceptable for 38.1%; and experiments on mice and monkeys were acceptable for 45.3% and 30.4%, respectively. Finally, 85.6% of participants agreed that the Belgian Government should strictly regulate IVG. In conclusion, preclinical research into IVG and other reproductive technologies elicits a great diversity of attitudes towards the importance of genetic parenthood and the acceptability of embryo and animal research. There is a need for public dialogue on these topics.

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.

Ten years of fertility treatment experience and reproductive options in transgender men.

BACKGROUND: Up to 2018, the Belgian law stated that transgender people who wanted to change their legal sex had to undergo physical gender affirming treatment. This included gonadectomy to a medically possible and justified extent, which entailed that they had to accept the fact that they could no longer reproduce. However, research has shown that many transgender people desire to have children. AIMS: (1) to describe a cohort of transgender men and their respective cisgender female partners, to share our experiences with their request for donor conception, and to evaluate their disclosure intentions to the child, (2) to explore how the couples approach current and future reproductive options. METHODS: This mixed method study presents data from a retrospective analysis of patient records and from a qualitative interview study. The couples were selected from the group of transgender men who - together with their respective cisgender female partners - applied for sperm donation at Ghent University Hospital between 2002 and 2012. RESULTS: Forty-seven transgender men with a cisgender female partner requested treatment with anonymous donor sperm for a first child as a couple. Forty-one requests were accepted for treatment. We found that most couples requesting treatment intended to disclose the use of donor sperm to their future child (n = 34) while 24 couples were planning to inform the child about the parent's transgender identity. The six couples we interviewed saw donor conception as the preferred route to become parents. Adoption was seen as less obvious. The couples' attitudes toward stem cell-derived gametes reflected the significance of the genetic link with the child for both parents. DISCUSSION: Not all participants in our study were aware of their reproductive options. To be able to make a well-informed decision, transgender people should be counseled about all options at the time of transition.

Public and patient involvement in health data governance (DATAGov): protocol of a people-centred, mixed-methods study on data use and sharing for rare diseases care and research.

INTRODUCTION: International policy imperatives for the public and patient involvement in the governance of health data coexist with conflicting cross-border policies on data sharing. This can challenge the planning and implementation of participatory data governance in healthcare services locally. Engaging with local stakeholders and understanding how their needs, values and preferences for governing health data can be articulated with policies made at the supranational level is crucial. This paper describes a protocol for a project that aims to coproduce a people-centred model for involving patients and the public in decision-making processes about the use and sharing of health data for rare diseases care and research. METHODS AND ANALYSIS: This multidisciplinary project draws on an explanatory sequential mixed-methods study. A hospital-based survey with patients, informal carers, health professionals and technical staff recruited at two reference centres for rare diseases in Portugal will be conducted first. The qualitative study will follow consisting of semi-structured interviews and scenario-based workshops with a subsample of the participant groups recruited at baseline. Quantitative data will be analysed using descriptive and inferential statistics. Inductive and deductive approaches will be combined to analyse the qualitative interviews. Data from scenario-based workshops will be iteratively compared using the constant comparison method to identify cross-cutting themes and categories. ETHICS AND DISSEMINATION: The Ethics Committee for Health from the University Hospital Centre São João/Faculty of Medicine of University of Porto approved the study protocol (Ref. 99/19). Research findings will be disseminated at academic conferences and science promotion events, and through public meetings involving patient representatives, practitioners, policy-makers and students, a project website and peer-reviewed journal publications.

Patients' moral attitudes toward electronic health records: Survey study with vignettes and statements.

Patient access to electronic health records gives rise to ethical questions related to the patient-doctor-computer relationship. Our study aims to examine patients' moral attitudes toward a shared EHR, with a focus on autonomy, information access, and responsibility. A de novo self-administered questionnaire containing three vignettes and 15 statements was distributed among patients in four different settings. A total of 1688 valid questionnaires were collected. Patients' mean age was 51 years, 61% was female, 50% had a higher degree (college or university), and almost 50% suffered from a chronic illness. Respondents were hesitant to hide sensitive information electronically from their care providers. They also strongly believed hiding information could negatively affect the quality of care provided. Participants preferred to be informed about negative test results in a face-to-face conversation, or would have every patient decide individually how they want to receive results. Patients generally had little experience using patient portal systems and expressed a need for more information on EHRs in this survey. They tended to be hesitant to take up control over their medical data in the EHR and deemed patients share a responsibility for the accuracy of information in their record.

'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.

Primary Care Physicians' Perspectives on the Ethical Impact of the Electronic Medical Record.

OBJECTIVE: The aim of this study is to explore whether specific ethical questions arise with the use of a shared electronic health record (EHR) system, based on the daily experience of primary care physicians (PCPs). METHODS: In this qualitative research project, we conducted 14 in-depth semistructured interviews with PCPs in a tertiary hospital setting. RESULTS: We identified 4 themes: 1) PCPs describe the EHR as a medicine with side effects, for which they provide suggestions for improvements; 2) A shared record raises ethical questions related to autonomy and trust; 3) Although use of the EHR often disturbs rapport with the patient, it can also support the patient-doctor interaction when it becomes an active part of the conversation; 4) A shared EHR may cause health care providers (and their relatives) to avoid seeking help for sensitive issues. DISCUSSION: PCPs fear access to results could cause confusion and anxiety in patients, resulting in tensions between autonomy and beneficence. Improved efficiency and quality of care with a shared EHR relies on doctors trusting each other's input to avoid duplicate tests. However, this might compromise a fundamental skeptical attitude in practicing medicine, and we should be aware of a risk of increased confirmation and anchoring bias. CONCLUSION: The EHR is considered to be a work in progress-EHR design could be improved by examining physicians' coping strategies and implementing their suggestions for improvement. Ethical questions related to autonomy, trust, and the status of records that belong to doctor-patients need to be considered in future research and EHR development.

The last vial. What it means to (aspiring) parents to use the same sperm donor for siblings.

Introduction: A lot of attention has been given to the quest of parents, children and donors to find donor siblings (= half siblings who share the same donor gametes but who are born in different families). However, literature is scarce about the use of the same sperm donor for subsequent children in the same family.Methods: This study included 68 lesbian and heterosexual (aspiring) parents, recruited at the Department of Reproductive Medicine of Ghent University Hospital (Belgium). The in-depth semi-structured couple interviews were performed between October 2012 and October 2013. Data were analyzed through step-by-step inductive thematic analysis.Results: The couples showed a clear preference to use the same sperm donor for their children. The most common reasons for this preference were related to the family or sibling relationships and medical reasons. Uncertainty about the availability of the same donor over time seeped through in their stories. Most lesbian aspiring parents decided that both partners should have a genetic link with at least one child.Conclusion: The use of the same sperm donor for subsequent conceptions appeared quasi unambiguously in the interviews of the lesbian and heterosexual (aspiring) parents in our 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.