Polygenic risk scores (PRS) are increasingly positioned as precision public health tools, yet their societal implications remain contested. This study explores how healthcare providers and researchers in Europe view the broader social, cultural, and public health dimensions of PRS, beyond their clinical utility. We conducted 26 semi-structured interviews with professionals in diverse medical and research fields. Transcripts were thematically analysed to identify recurring patterns of meaning. Participants’ perspectives were organized into six themes addressing: the societal implications of using PRS to inform public health prevention programs and institutional responsibilities with regard to the social determinants of diseases; equity concerns, including transferability across populations, fair distribution of benefits, and access disparities; the socio-cultural narratives—and political implications- of the shift from diagnosis to prediction in genomic medicine; ethical challenges in direct-to-consumer PRS, particularly regarding responsibility and regulation; structural barriers hindering clinical use and implementation; the need for normative frameworks guiding ethical oversight. Our findings highlight that PRS in society carry implicit assumptions about risk, responsibility, and the cultural and institutional values that shape their use and impact. While PRS may inform public health strategies, their promise to improve population health is contingent upon approaches that are ethically sensitive, attentive to societal and institutional contexts, and aligned with the specific objectives they are intended to serve within public healthcare systems.

With increasing recognition of children’s evolving decision-making capacities, assessing decision-making capacity in pediatric clinical practice has become legally and ethically important, yet no standardized assessment approach exists. The aim of this systematic review was to identify and evaluate assessment tools for decision-making capacity in children and to examine their clinical applicability and validation in pediatric populations. We conducted a systematic search in accordance with PRISMA guidelines across major academic databases and grey‑literature sources. Two reviewers independently screened studies and extracted data using predefined criteria. We appraised validation studies using the QUADAS‑2 tool. Due to substantial heterogeneity in study designs, populations, and outcomes, a descriptive synthesis was conducted. A total of 27 peer‑reviewed studies and one guideline met the inclusion criteria. Across these studies, we identified seven tools: the MacArthur Competence Assessment Tools (MacCAT-T and MacCAT-CR), the Measure of Competency to Render Informed Treatment Decisions (MOC), the Maturtest, the University of California San Diego Brief Assessment of Capacity to Consent (UBACC), the Competency Questionnaire for Pediatric Population (CQ-Peds), and the Hopkins Competency Assessment Test (HCAT). The assessment tools demonstrated considerable heterogeneity in purpose, conceptual grounding, methodological approach, administration, time requirements, scoring procedures, and validation in child populations. The Maturtest, assessing moral maturity, and the child-adapted MacCAT-CR, assessing decision-making capacity in clinical research, are the only two identified validated assessment tools in a child population. One official WHO guideline was also identified. We identified seven assessment tools, assessing either moral maturity or decision-making capacity. The child-adapted MacCAT-CR remains the only validated instrument for assessing decision-making capacity in children, although mainly in research settings. No validated tool for routine clinical practice was identified, highlighting the need for clinically applicable, multidimensional assessment tools. PROSPERO: CRD420251052918.

In this paper, we document a tension in the European Code of Conduct for Research Integrity: the Code seeks to limit the influence of non-epistemic values, and yet, it recognizes that such values play a legitimate role in research. By comparing various versions of the Code, we argue that, over time, there has been less explicit recognition of the complexity of the relation between research and societal values. Currently, the Code does not give guidance on what value influence count as undesirable or as "undue pressure," and conflates the issues of value-freedom and scientific freedom. As the impact of non-epistemic values is becoming increasingly evident, we recommend that future codes start by explicitly acknowledging the challenges inherent in the relation between science and societal values, and we offer an example of how the ECoC could be revised to meet this recommendation.

Background: Gender dysphoria denotes the psychological distress experienced by individuals due to the incongruence between their gender identity and their sex assigned at birth. Gender-affirming surgery (GAS) is one of the treatment options available for people with gender dysphoria. This study aims to identify and analyze all ethical reasons both supporting and opposing GAS as a treatment option for gender dysphoria in adults. Methodology: A systematic review of reasons was conducted in accordance with the methodology proposed by Strech and Sofaer (2012) and the PRISMA guidelines. The literature search was conducted in seven major online databases—PubMed, Scopus, Embase, Web of Science, Philosopher’s Index, ATLA Religion, and Index Theologicus—and in the Google Scholar search engine. Results: Twenty-nine articles published between 2003 and 2024 met the inclusion criteria. The ethical reasons identified in the included literature were grouped into five thematic categories: (1) the origin and nature of gender dysphoria, (2) reasons related to GAS as a treatment for gender dysphoria, (3) anthropological reasons, (4) reasons related to the effects of GAS, and (5) reasons stemming from traditional ethical principles. Discussion: The wide range of ethical reasons both supporting and opposing GAS as a treatment option for gender dysphoria in adults highlights the complexity of ethical deliberation in this area. This review provides a structured overview of the ethical reasons discussed in the literature, identifies important gaps, and suggests directions for future research.

BACKGROUND:Institutional financial incentives(FIs) are used to improve the quality of healthcare services and patient outcomes. In spite of their growing use, empirical evidence regarding their impact remains inconclusive. Moreover, the normative implications of institutional FIs remain underexplored. This study aims to map the normative considerations and tensions in using institutional FIs in healthcare. METHODS:We performed a systematic review of reasons to identify and map the normative considerations in institutional FIs. Six databases, namely PubMed, Embase, Scopus, Web of Science, ProQuest Central and EconPapers, and additionally Google Scholar were searched. We included peer-reviewed literature in English on financial incentives or pay-for-performance in healthcare at the institutional level, and excluded grey literature, and studies on individual provider incentives. RESULTS:Sixteen articles met the inclusion criteria, representing diverse disciplines such as health economics, medicine, law, public health and health policy. Two categories of normative considerations are identified: firstly, considerations at the macro and meso level (societal and institutional level), and secondly, considerations at the micro (departmental or individual) level. The key normative principles identified are effectiveness, utility, solidarity, distributive justice, procedural justice, professional values, conflicts of interest and proportionality. The tensions inherent in each normative principle are closely linked to contextual elements such as institutional characteristics, incentive design and performance measures: for instance, the type of performance measure used (process or outcome measure, relative or absolute improvement) impacts procedural justice. DISCUSSION:This study is limited in including only English language literature. Notwithstanding this limitation, this review provides an overview of the normative implications of institutional financial incentives. As robust empirical evidence on the institution and societal-level effects of FI is lacking, these findings emphasize the need for further normative deliberation on institutional FIs and more caution while implementing institutional FIs as a policy measure.

In the last decade, substantial research efforts have started worldwide to foster the clinical translation of Polygenic Risk Scores (PRS). Understanding the views of key relevant groups becomes timely to critically inform the socio-ethical debate, impact future health policy, and support the development of guidelines for best practices in healthcare contexts. We performed 26 in-depth semi-structured interviews to investigate the perspectives of European researchers and healthcare providers from different specialties (clinical genetics, oncology, cardiology, psychiatry) on the ethical and social implications of PRS uses in healthcare contexts. Findings were conceptualized in four main themes: 1) appropriate clinical use, highlights that PRS should be considered complementary tools aimed at informing a clinical intervention, with notions of appropriateness differing according to clinical goals and condition-type; 2) clinical utility: what's the evidence? captures participants' orientations towards the capability of PRS to improve health outcomes compared to standard care, as well as the barriers, limitations, or emerging areas of utility; 3) balancing risk and responsibility: navigating ethical questions in patient care, addresses classical issues in clinical genetics, including communication and counselling, potential patient harms, relevance of PRS information to family members, and the use of PRS in pediatric settings; 4) searching for standards: clinical guidelines, gathers perspectives on the potential format and content of future clinical guidelines, relevant parties, and contexts of applicability. In conclusion, the present study outlines a framework to define the range of responsible uses in healthcare contexts; however, societal and public health considerations, including priority-setting in national healthcare systems, need to follow for a comprehensive, and contextual, evaluation of PRS.

Ethical authorship practices ensure both accountability and credibility. In this study, we estimated the frequency of encountering honorary and ghost authorship at least once among researchers at Hamad Medical Corporation (HMC) in Qatar. Additionally, we evaluated researchers’ familiarity with standard authorship guidelines. Using a cross-sectional design, we administered a pre-developed anonymous online survey to 4043 researchers. Descriptive statistics in the form of percentages and frequences along with a 2-sided Chi-square tests were used. Significance was defined as p ≤ .05. Overall, researchers demonstrated low awareness of adopted authorship guidelines. While 24% of respondents reported never having heard of the International Committee of Medical Journal Editors (ICMJE) guidelines, 76% were aware of them but unfamiliar with the content. Additionally, the low awareness coincided with reported frequencies of having encountered honorary and ghost authorship at least once—70.5% and 45.5%, respectively. In conclusion, authorship misuse is a significant issue in Qatar, and appears to occur at levels consistent with those found in international surveys. It remains a delicate matter that can be approached by promoting awareness, educating researchers, and encouraging adherence to guidelines.

This is a two-part review of the ethical issues arising from the exportation of biological samples from the developing world. With the burgeoning of research in the developing world carried out in collaboration with partners from the developed world there has been a corresponding increase in the exportation of samples for various reasons. This has raised a number of ethical issues, ranging from the purpose of exporting the samples to the ownership of the exported samples. Objective: To explore and discuss the main ethical issues arising from the exportation of samples from the developing to the developed world in general and using the case of Zambia. Methods: A review of the current existing literature on the issue of exportation of biological samples and biobanking was carried out. Part I of the review will consider exportation of biological samples in general whereas Part Il will address the Zambian situation and discuss the developments in depth.

Objectifs Après des décennies de recherches et d’expérience cliniques, il est clair que les troubles du spectre autistique (TSA) restent étonnamment hétérogènes, sur le plan du phénotype comme de l’étiologie et des mécanismes cognitifs. Comment ces résultats divers sur le TSA, principalement issus de recherches « basiques », peuvent-ils se traduire en informations utiles et pertinentes pour les parents et pour les cliniciens ? Peu d’études visent à détecter le point de vue et les expériences des parents et praticiens dans le diagnostic de TSA, et établissent une réflexion éthique autour de ces perspectives personnelles. Dans le travail actuel, nous formulons pour les cliniciens et les décideurs politiques des pistes de réflexion en ce qui concerne la prise en charge clinique du TSA chez les jeunes enfants. Méthode À travers des entretiens approfondis nous avons étudié comment les parents et les cliniciens belges néerlandophones perçoivent un diagnostic de TSA d’un jeune enfant. Les parents ont été interviewés à trois occasions : avant le début du bilan diagnostique TSA, après la remise des résultats du bilan, et 12 mois après l’établissement du diagnostic. Les entretiens ont été analysés dans Nvivo 11 d’après le protocole de l’Analyse Phénoménologique Interprétative. Résultats Les parents et les médecins interrogés attachent autant d’importance aux implications intrapsychiques et relationnelles d’un diagnostic de TSA qu’aux implications éducatives et thérapeutiques. La conséquence « psycho-relationnelle » de la déculpabilisation est particulièrement appréciée, consistant en ce que le parent comme l’enfant soit déchargé de la responsabilité du comportement inhabituel de l’enfant. Un an après l’établissement du diagnostic de leur enfant, les parents en viennent souvent à relativiser ces implications « psycho-relationnelles », et leur vision sur le diagnostic de TSA prend un caractère pragmatique. Les droits aux soins ouverts par le diagnostic, les adaptations que les parents et certains adultes sont prêts à faire dans leur interaction avec un enfant qui est diagnostiqué avec un TSA, sont devenus les points les plus importants. Les praticiens interviewés de leur côté valorisent également l’utilité d’un diagnostic de TSA pour décrire l’enfant devant les parents et les professeurs d’école comme « il voudrait faire ce qu’on lui demande mais il ne pourrait pas ». Ils trouvent plus utile d’établir un profil diagnostique descriptif de l’enfant axé sur le traitement, profil dans lequel le diagnostic catégorique de TSA peut occasionnellement s’avérer d’une utilité supplémentaire. Discussion Tant pour les cliniciens que pour les décideurs politiques, nos résultats conduisent à des considérations pour la clinique des TSA des jeunes enfants. Un diagnostic de TSA apparaît n’offrir qu’une aide limitée aux parents et aux cliniciens, mais il peut être pertinent si le bilan diagnostique est basé explicitement sur la demande d’aide. Il sera d’autant plus pertinent s’il est mené d’après un modèle de communication de « prise de décision partagée », dans lequel un tableau descriptif de l’enfant est établi en vue d’une orientation de l’aide thérapeutique et éducative ultérieure. Conclusion Un modèle de communication clinique sur base d’un dialogue ouvert sur les points de vue, les espoirs et les préoccupations des parents qui se présentent pour un bilan TSA de leur enfant, peut conduire à un meilleur alignement entre le médecin et les parents et à un parcours d’aide plus satisfaisant pour les deux partis.

Goal. - After three quarters of a century of research and clinical experience, autism spectrum disorder (ASD) turns out to be surprisingly heterogeneous in its presentations, causes, and cognitive mechanisms. In light of the varied nature of this diagnosis, it is unclear how the array of (predominantly "basic") research findings on ASD is translated into information that is meaningful and valuable to parents and clinicians. Few studies are dedicated to detecting the views and experiences of an ASD diagnosis of a child by parents and clinicians, nor to engaging an ethical reflection on their personal perspectives. An ethical reflection on the results of the empirical studies with parents and physicians leads to the formulation of clinical-ethical considerations towards both policy-makers and clinicians concerning the clinical care offered to young children with ASD. Method. - We conducted in-depth interviews on how parents and physicians view and experience a young child's ASD diagnosis. Parents were queried longitudinally: before the start of the diagnostic ASD assessment, right after the feedback session at the end of the assessment, and 12 months later. The interviews were analyzed in Nvivo 11 according to the guidelines of Interpretative Phenomenological Analysis. Results. - The interviewed parents and physicians addressed 'psycho-relational' implications of an ASD diagnosis as much as 'treatment-oriented' implications. The psycho-relational 'exculpatory' effect was particularly appreciated, which consists in both parents and child being able to exonerate themselves with regard to the child's unusual behavior towards both the parents and other adults. The interviewed parents and physicians often came to view the ASD diagnosis in a pragmatic way, in the light of its usefulness for child, parents, and to a lesser extent, professionals. Twelve months after their child received an ASD diagnosis, the interviewed parents mainly had come to value the ASD diagnosis for two reasons: the access to care it ensured, and the framework it provided allowing them to adapt their interactions with the child because of the ASD diagnosis. The interviewed physicians from their side needed an ASD diagnosis in order to be useful in their clinical practice, particularly in cases where they were able to describe the child toward parents and teachers using phrases such as "he wants to do what is expected from him but is not able to", and in order to provide appropriate care. Clinicians expressed some doubts about the use of and need for a formal diagnosis. They preferred to establish a descriptive and treatment-oriented profile of the child, a profile of which an ASD diagnosis was sometimes considered to be just one useful part. Discussion. - Based on an ethical analysis and reflection, we formulate four clinico-ethical considerations in relations to policy, and four in relation to clinical practice. For policy-makers, this study's findings sustain an argument for continuity in the care journey, starting from parents' request for help up to the answer to this request. We also suggest that services do not need to be ASDspecific but suited for and adapted to each child with behavioral issues, with and without an ASD diagnosis. For clinicians, we argue for the expansion of the clinical model of shared decision-making and person-centered medicine when dealing with ASD in young children. Conclusion. - An ASD diagnosis in itself may be of limited help to parents and clinicians but can be of use if it is embedded in a request-oriented diagnostic process aimed at elaborating a treatment-oriented profile of the child. A clinical communication strategy incorporating an open dialogue on parents' views, hopes, and concerns may lead to a better alignment between physician and parents, and a more satisfying clinical trajectory for both. (c) 2025 Elsevier Masson SAS. All rights are reserved, including those for text and data mining, AI training, and similar technologies.

Human brain organoids (HBOs) are three-dimensional structures derived from human pluripotent stem cells that model aspects of fetal brain development. As HBO models grow more complex, ethical concerns arise, particularly around the potential for consciousness. Defining and detecting consciousness in HBOs remains unresolved, with existing theories offering conflicting predictions. This systematic review examines how consciousness is conceptualized in the ethical and philosophical literature concerning HBOs. We selected peer-reviewed publications written in English from 2013 onward that directly address consciousness regarding HBOs. After screening 51 sources, 24 were analysed in themes: Consciousness Terminology, Biological Limitations, Theories of Consciousness, Detecting Consciousness, Comparisons with Conscious Entities, and Special Entities. Uncertainty about consciousness in general complicates the conversation around HBOs. Clear communication is essential to avoid misconceptions, and future research may benefit from focusing on organoid intelligence as a more tractable concept.

BackgroundAs criteria for diagnosing Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) evolves, AD-related biological measures of biomarkers (e.g., amyloid, tau) and genetic status (e.g., APOE) have gained heightened value in research, and, notably, increased personal significance for participants.ObjectiveTo identify recommended approaches for sharing individual research results with participants in AD/ADRD research and determine expert consensus on best practices for sharing individual research results to participants in AD/ADRD research.MethodsThis online, modified Delphi study consisted of four rounds of surveys conducted with Alzheimer's disease research experts, including neurologists, ethicists, neuropsychologists, geneticists, clinical trialists, and other research stakeholders. The Delphi survey was informed by a targeted literature review of previously published recommendations on sharing individual research results in AD/ADRD research. A total of 81 experts were surveyed across all rounds, ranking statements on a 7-point Likert scale and providing feedback in short answer responses. After each round, feedback reports were shared to inform subsequent responses. Proportion of agreement and qualitative feedback were analyzed, with consensus defined as 75% or greater agreement.Results41 initial statements were evaluated and refined based on consensus and feedback. Concluding the final round (round 3), consensus (≥75% agreement) was achieved on 25 statements, resulting in a set of recommendations related to: study design, clinical relevance, results sharing processes, communication and understanding of results, counseling and support, and follow-up.ConclusionsThe findings of this online, modified Delphi study provide a foundation for developing standardized, ethically grounded practices for returning individual research results in Alzheimer's disease studies.

BACKGROUND:Many peer review attributes are widely criticized and poorly investigated, particularly in the context of proposals' peer review. This study aims to explore stakeholders' perspectives on the role of (un)blinding and the implications of open peer review for biomedical proposals' peer review. METHODS:We conducted a generic descriptive qualitative study within a constructivist paradigm, using semi-structured interviews. Twenty-three participants were selected through purposive and snowball sampling from funding agencies in Belgium and Qatar. Transcribed interviews were analyzed according to the 6-step thematic framework analysis. During the interviews, participants were asked to rate 7 quantitative statements to supplement the qualitative data. RESULTS:Codes with shared characteristics were grouped into categories, and ultimately three themes were generated: (1) the importance of increased transparency in fund allocation procedures while maintaining blinded reviewers' identities, (2) open peer review as a feasible approach for enhancing transparency and accountability in proposals' peer review, and (3) a growing critical stance toward traditional peer review systems. CONCLUSION:While there remains a strong preference for double-blinded review within the context of our study, its limitations have become evident-particularly given current funding challenges. These shortcomings highlight the need for greater openness in peer review and increased transparency in fund allocation processes.

Polygenic Risk Scores (PRS) are statistical methods estimating part of an individual’s genetic susceptibility to various disease phenotypes. Their potential clinical applications to enhance the prediction, prevention, and risk management of complex conditions motivate current research efforts worldwide. While a growing body of literature has highlighted the scientific and ethical limitations of PRS, the technology’s clinical translation will present both opportunities and challenges for the stakeholders involved. Here, a mixed-method systematic review of empirical studies was performed to gather evidence on the perspectives, attitudes, and experiences of healthcare providers, patients, and the public regarding the use of PRS in healthcare settings. The PRISMA reporting protocol was followed and 24 articles were included. Three major themes were identified. First, we reported on participants’ familiarity with the test, including their knowledge, understanding, and education on PRS’ clinical use. The second theme collects stakeholders’ motivations for taking the test and their perspectives on sensitive issues related to the return of results. Participants’ normative stances regarding the appropriate use of PRS, their benefits, and harms were presented in the third theme. The findings underscore significant knowledge gaps and challenges in the clinical interpretation of PRS among healthcare providers. On the other hand, the provision of genetic counseling benefitted patients’ understanding of PRS results and in most cases, no psychosocial burden was reported. Finally, the review highlights that stakeholders’ perspectives on the clinical use of PRS are highly context-dependent, shaped by population characteristics, disease type, and social factors, emphasizing the need for tailored approaches across diverse healthcare settings.

Adolescence is a period of growing independence and maturity, within the period of legal minority. As parents or guardians are socially and legally responsible for adolescents’ medical decisions, shared decision-making in adolescent healthcare could be ethically challenging. This review aims to identify and map the ethical tensions in shared decision-making in adolescent healthcare. We systematically searched the literature following the PRISMA guidelines to identify relevant articles, which were analyzed using the review of reasons methodology Strech and Sofaer (J Med Ethics 38(2):121-6, 2012). We included 38 articles which involved adolescents, healthcare professionals and parents as being the main stakeholders. Shared decision-making was influenced not only by individual stakeholders’ characteristics, but by tensions between stakeholder dyads. Most studies supported the involvement of the adolescent in decision-making, depending on their life experience, decision-making capacity and clinical condition. Shared decision-making in adolescent health is receiving increasing attention. However, questions remain on what this concept entails, the roles and involvement of stakeholders and its practical implementation.

Responsible research practices are critical to maintaining integrity in research and the provision of institutional trainings is an important means of promoting research integrity. However, studies show contrasting results on the efficacy of institutional training and that these approaches may not be fully effective in promoting research integrity among individuals and improving the overall climate in research integrity. Therefore, a more comprehensive multi-dimensional learning strategy seems to be needed. This includes continuous and tailored training at different institutional levels, the incorporation of training sessions focusing on the development of the moral character of researchers, and the use of different mentoring practices. With this comprehensive approach, research institutions can foster a culture of integrity in research, improve the overall research integrity climate and promote responsible research practices by individuals.

(1) Background: Caring for pregnant cancer patients is clinically and ethically complex. There is no structured ethical guidance for healthcare professionals caring for these patients. (2) Objective: This concept paper proposes a theoretically grounded framework to support ethical and patient-centred care of pregnant cancer patients. (3) Methodological approach: The framework development was based on ethical models applicable to cancer care during pregnancy—namely principle-based approaches (biomedical ethics principles developed by Beauchamp and Childress and the European principles in bioethics and biolaw) and relational, patient-focused approaches (relational ethics, ethics of care and medical maternalism)—and informed by a systematic review of clinical practice guidelines. (4) Results: Five foundational discussion themes, summarising the key ethical considerations that should be taken into account by healthcare professionals while discussing treatment and care options with these patients, were identified. This was further developed into a comprehensive ethics checklist that can be used during clinical appointments and highlights the need for a holistic view to patient treatment, care and counselling while providing ethical, patient-centric care. (5) Conclusion: The proposed framework was further operationalised into an ethics checklist for healthcare professionals that aims to help them anticipate and address ethical concerns that may arise when attending to pregnant cancer patients. Further studies exploring clinicians’ attitudes towards cancer treatment in the course of pregnancy and patient experiences when diagnosed with cancer while pregnant and wider stakeholder engagement are needed to inform the development of further ethical, patient-centred guidance.