This paper examines recent developments in direct-to-consumer genetic (DNA) testing (DTCGT) and the ethical challenges it raises for those affected by donor conception (using donated gametes, eggs and sperm, to conceive children). First, DTCGT can result in the complete removal of donor anonymity at any stage in the donor conceived person’s life, and this has widespread implications for all those involved in donor conception. Second, for regulators: DTCGT can disrupt regulatory prohibitions on information disclosure. Third, for donor conceived people: there is potential harm in discovering you are donor conceived via DTCGT, and DTCGT creates new 'gatekeepers' of knowledge about donor conception, who have to decide whether to disclose this information. DTCGT also raises normative questions for those involved in donor conception. For donors: do donors have any obligation to participate in DTCGT, or to provide their genetic data to donor conceived offspring? For parents through donor conception: how does DTCGT affect decisions about disclosing donor conceived origins to their child, and should parents test their child, and if they decide to do so, when? The paper concludes by making recommendations for how the ethical challenges posed by DTCGT might be overcome or at least ameliorated.
There is little consensus on how to regulate information giving in reproductive donation - using donated gametes (eggs, sperm) to have children. Should gamete donors be anonymous or should donor-conceived individuals have access to their donor's identity, and at what age? What information should be available about donor siblings and other donor relations? And, crucially, how should this information giving be appropriately managed and regulated? Before we can answer these questions, we need to first understand what reproductive donation is. This paper sets out options for how reproductive donation can be conceptualized and develops a typology of different approaches, by categorizing reproductive donation into two main models: the biomedical and the psychosocial. These models provide a conceptual framework, a useful heuristic, for both understanding reproductive donation and critiquing regulation and oversight. The purpose of this paper is not to take a stand on which model is optimal; this is a matter for further debate. Rather, it provides clarification of what is at stake, and this can form the basis for coherent and justifiable approaches to the oversight and regulation of reproductive donation, instead of the patchwork of provisions that currently exist in many jurisdictions.
Introduction Admission to the ICU involves experiential burdens and a risk of a negative dying experience if patients do not survive their critical illness. Many patients who are critically unwell, or their surrogate decision-makers, must decide about accepting ICU treatment without knowing what it is like. People who have been through ICU treatment can provide useful insights into what it might be like to die in ICU and what chance of survival makes ICU treatment acceptable to them.Methods This study utilised a mixed methods approach involving questionnaires and semi-structured interviews which were analysed using a reflexive thematic analysis approach. This was done to provide a deep and rich analysis of how participants' experiences of ICU treatment and end-of-life wishes affected their reflections about what it might be like to die on an ICU, and their willingness to accept ICU treatment again in the future.Results Twenty-six people who had experienced ICU as patients were interviewed. Whilst some positive experiences were reported, participants thought the negative experiences associated with ICU made it likely that dying on ICU would be a negative dying experience. Being a patient in an ICU involved a confrontation with mortality, loss of control and total dependence, and was described as a transformative experience. Participants considered the chance of survival to be an important consideration in shared decision-making with ICU clinicians about ICU treatments. The median chance of survival that made ICU treatment acceptable was 30%.Discussion An understanding of the experiences associated with being a patient in the ICU can inform how patients and clinicians consider the risk-benefit analysis of ICU treatment. The experiential harms of ICU admission and the risk of ICU treatment resulting in a negative dying experience may outweigh the survival benefit that ICU treatment will offer a patient when there is a low chance of survival.
Pennings' recent paper addresses a very current and important issue in reproductive donation, should we limit the numbers of children born from each gamete donor? In this perspective piece, we raise counter-arguments to Pennings' claims that the use of gamete donors should not be limited.
The COVID-19 pandemic had a significant impact on how healthcare and social care were delivered in the United Kingdom. Infection prevention and control measures were introduced in all settings to prevent transmission within, to, and from them. A case study of an inner-city pediatric surgical ward in late autumn 2020 was created for this chapter to explore the ethical and legal dimensions of the impact of these measures on patients, their families, and healthcare staff. Material for the case study and the impacts discussed were informed by research carried out during the pandemic. As part of a project entitled When Pandemic and Everyday Ethics Collide: Supporting Ethical Decision-Making in Maternity Care and Pediatrics During the COVID-19 Pandemic, a National Health Service (NHS) Reset Ethics Project. Data was collected from NHS staff and service users between July 2020 and September 2021. The chapter discussion reflects research findings related to the loss of community on hospital wards and the effect this had on staff and parents. The chapter also addresses how parental visiting restrictions may have eroded parents’ rights to family life and the loss of their right to parent. Finally, the chapter explores the negative effects on all concerned of staff being responsible for policing restrictions on the ward. The measures were, on balance, proportionate, given the staff’s duty of care, but the costs were probably more significant than originally envisaged. This should be reflected in future planning measures and in greater stakeholder involvement.
The Journal of Medical Ethics celebrated its 50th anniversary in 2025. This milestone created the opportunity for reflection on how the journal and, more broadly, the field of medical ethics has changed, and what the future should look like. To do this, we explored the views of attendees at the Institute of Medical Ethics (IME) annual conference in 2025 on the future of medical ethics. Our study aims to shed light on: (1) the aspects of today's ethical landscape in need of greater attention; (2) the contemporary factors that are likely to shape the future of medical ethics; and (3) the role that medical ethics should play in healthcare and related fields in the future.We conducted a mixed-methods study. The study consisted of a questionnaire that included both quantitative and qualitative elements, and a small number of participants attended an explorative focus group. A total of n=53 survey responses were included in the final sample, and n=9 individuals participated in our focus group.Our findings highlight the need to account for relationality in medical ethics, and identified emerging technologies as a cause of future ethical complexity. Moreover, our findings support the need for a decolonised and more inclusive medical ethics. We also explore what medical ethics education should look like in the future.
STUDY QUESTION: How should the number of offspring per gamete donor be regulated at an international level? SUMMARY ANSWER: The European Society of Human Reproduction and Embryology (ESHRE) recommends introducing a European Union (EU)-wide limit on the number of families per gamete donor, starting at 50 families and gradually reducing it to a maximum of 15 families or lower, supported by an EU-wide donor registry to monitor compliance. WHAT IS KNOWN ALREADY: Most European countries impose national limits on the number of offspring or families per donor, but these limits vary widely and are not always enforced. Cross-border movement of patients and the export of donor gametes between countries mean that large donor sibling groups can still emerge despite these restrictions. What matters to donor-conceived people is the total number of donor siblings, regardless of which country they are in, making a transnational limit the only relevant mechanism that can address this issue. STUDY DESIGN, SIZE, DURATION: This position paper sets out principles relevant to international donor offspring limits and the position and policy recommendations of ESHRE, focusing on the EU level. PARTICIPANTS/MATERIALS, SETTING, METHODS: This ESHRE position paper was developed by a multidisciplinary expert working group. Recommendations are supported by data from the literature, where available. The first version was published for stakeholder review in November 2025, with 45 completed review forms received from organizations representing donor-conceived people, families built through donor conception and infertility patients, national fertility societies, researchers, professionals from different disciplines, and gamete banks. The paper was then revised on the basis of the stakeholder review. MAIN RESULTS AND THE ROLE OF CHANCE: ESHRE considers that the wellbeing of donor-conceived people should have the highest priority when determining limits, while also balancing the wellbeing of prospective parents. Limits should be set for the number of families rather than individual children. ESHRE proposes a phased introduction starting at 50 families per donor, being reduced to a maximum of 15 families or lower, alongside a 20-year cap on distributing gametes to new families after the first donation. National limits should still be upheld where they are lower, and donors should be able to set their own lower personal limit. Compliance should be monitored through an EU-wide donor registry or, failing that, national registries, with gamete banks (including non-EU banks exporting into the EU) obliged to enforce the limit, donors required to declare all previous donations, and families counted as potential live births unless confirmed otherwise. LIMITATIONS, REASONS FOR CAUTION: The evidence base on the psychosocial impact of large donor sibling groups is small and developing, and definitive evidence of harm is limited. Research on the preferences of donor-conceived people, donors, and recipients regarding offspring limits is scarce and inconclusive. These recommendations therefore take a precautionary approach, and the proposed 15-family limit should be reviewed in light of developing knowledge during the transition period. WIDER IMPLICATIONS OF THE FINDINGS: An EU-wide limit would represent a feasible first step towards an international limit. An EU-wide donor registry could potentially serve secondary purposes such as supporting tracing in case of the diagnosis of a serious genetic condition and giving access to information to donors and donor-conceived people. FUNDING: Support for the working group was provided by ESHRE. DISCLOSURES: L.F. and C.C.-J. report travel support from ESHRE. D.P.B. reports speakers' fees from Merck, Ferring, Gedeon Richter and MSD, travel support from ESHRE, and a position as the president of the Croatian Society for Gynaecological Endocrinology and Human Reproduction. A.A. reports speakers' fees from Merck Healthcare KGaA and Ferring, travel support from ESHRE, passive shareholder interest in Inception Midco 1. S.à r.l., membership in a subgroup of the European Medical Devices Coordination Group, and a position as vice chair of the EXPAMED panel on obstetrics, gynaecology and reproductive medicine. G.N. reports speakers' fees from Gedeon-Richter and Organon, travel support from ESHRE, and a position as past chairman and member of the Executive Committee of the Bulgarian Association for Human Reproductive Embryology. P.T. reports speakers' fees and travel support from Ferring and Gedeon Richter and a position as a board member on the Arbeitskreis donogene Insemination. J.K.-B. reports speakers' fees from Ferring, IBSA, Merck and CooperSurgical, travel support from Merck and ESHRE, an associate editor position for the journal Andrology, and a position as chair of the scientific advisory committee of the Association for Reproductive and Clinical Scientists (ARCS). The remaining authors (J.T. and N.V.) have nothing to declare. TRIAL REGISTRATION NUMBER: n/a.
Online sperm donation (OSD) connects prospective parents ('recipients') with donors via digital platforms. While prior research has focused on motivations and experiences, little attention has been given to the norms, identities, and relational dynamics shaping interactions on OSD platforms. Drawing on a year-long digital ethnography of five OSD platforms, this paper reports on a thematic analysis of multi-modal data that show that mistrust was pervasive. Users engaged in ongoing surveillance and scrutiny to 'stay safe' and protect others and future donor-conceived children. Norms about who was 'safe' or a 'good' donor or recipient influenced self-presentation and selection. Experienced donors were often constructed as knowledgeable, legitimising their authority to define what was 'normal'. Platform architectures, including user-driven safety features and gamification, shaped interactions, sometimes paradoxically contributing to harm rather than preventing it. These findings are situated within broader literature on digital sharing economies and connection platforms.
This article investigates how Direct-to-Consumer Genetic Testing (DTCGT) affects people impacted by donor conception by bringing empirical data on how people in this context respond to a DNA match into conversation with debates on kinship and personal life. Our aim is to conceptually engage with a salient emerging empirical theme, namely that people at the interface of donor conception/DTCGT respond to a (previously unknown) DNA match on a continuum of receptiveness marked by 'embrace' at one extreme end, and 'reject' at the other. Engaging theoretically with 'extreme end' responses, we argue that people in this situation necessarily consider how to navigate and integrate two different forms of kinship: the 'born and bred' kinship of their existing everyday relationships, and the 'accelerated kinship' with 'donor connections' emerging in the wake of a match. We propose that people's responses to a DNA match are shaped by the ways in which strands of their 'born and bred' kinship to do with ontology, belonging, relationality, emotionality, power and temporality have mixed into unique, ossified forms over time within their family. Ultimately, we argue that responses are relational, and that a genetic match can operate as 'relational dynamite' in families.
This article considers John Harris' work on autonomy, specifically reproductive autonomy, outlined in The Value of Life and developed throughout his career. Harris often used the concept of reproductive autonomy to make the case for liberal approaches to developments in reproductive and genetic technologies. Harris argued that reproductive autonomy should be highly valued, and therefore we need compelling arguments to justify limiting it in anyway. When discussing reproductive autonomy, Harris focused mainly on restrictions on the potential users of reproductive technologies autonomy, that is, prospective parents. This article extends the discussion of autonomy and the appropriate limits to individuals exercising their autonomy to medical professionals working in this area. Given reproductive technologies have become part of routine medical practice, this article considers whether the current restrictions on both patients and clinicians, as imposed by regulators and professional guidelines, remain ethically justified.
IntroductionAs health systems struggled to respond to the catastrophic effects of SARS-CoV-2, infection prevention and control measures significantly impacted on the delivery of non-COVID children's and family health services. The prioritisation of public health measures significantly impacted supportive relationships, revealed their importance for both mental and physical health and well-being. Drawing on findings from an expansive national collaboration, and with the well-being of children and young people in mind, we make recommendations here for post-pandemic recovery and re-build.MethodsThis consensus statement is derived from a cross-disciplinary collaboration of experts. Working together discursively, we have synthesised evidence from collaborative research in child and family health during the COVID-19 pandemic. We have identified and agreed priorities areas for both action and learning, which we present as recommendations for research, healthcare practice, and policy.ResultsThe synthesis led to immediate recommendations grouped around what to retain and what to remove from “pandemic” provision and what to reinstate from pre-pandemic, healthcare provision in these services. Longer-term recommendations for action were also made. Those relevant to children's well-being concern equity and relational healthcare.DiscussionThe documented evidence-base of the effects of the pandemic on children's and family services is growing, providing foundations for the post-pandemic recovery and re-setting of child and family health services and care provision. Recommendations contribute to services better aligning with the values of equity and relational healthcare, whilst providing wider consideration of care and support for children and families in usual vs. extra-ordinary health system shock circumstances.
A generation on from the Warnock Report, the regulatory system it proposed remains largely intact, despite significant changes in the fertility sector, legal culture and wider society. In this article, we trace Warnock's legacy, focusing on the context of gamete donor conception. Drawing on illustrative examples from the ConnectedDNA research project, we analyse two aspects of Warnock's proposals - its recommendation that gamete donors should be anonymous and its key assumption that only the 'triad' of donor, recipient(s) and donor-conceived people have an interest in receiving information about each other. The jettisoning of donor anonymity coupled with a questioning of Warnock's assumptions about the meaning of 'family', illustrate the challenges inherent in a key Warnock objective: to 'future proof' fertility law. Both the global market in gametes and embryos and the accessibility of Direct-to-Consumer Genetic Testing (DTCGT) technologies were wholly unforeseen by Warnock. Similarly, contemporary understandings of donation, families, kinship and relatedness exist in tension with Warnock's original assumptions and, thus, with the principles underpinning the legislative framework. Given this, we recommend three specific reforms to the regulation of donor conception: (1) an urgent review and reformulation of information-sharing provisions, particularly with regard to donor-siblings; (2) an expansion of counselling and support provisions for those affected by donor conception; and (3) the effective imposition of a global ten-family limit. More generally, we suggest that piecemeal and ad hoc reforms to the Human Fertilisation and Embryology Act 1990 have often appeared contradictory and have failed to grapple with the global nature of fertility practice. Thus, we conclude by arguing that a comprehensive review of the legislative framework is needed to create a system of legal governance which meets the needs of the donor conceived community and remains fit for purpose in the twenty-first century.