BMC Medical Ethics最新文献

{"title":"Motivations, acceptability and ethical considerations for interventional HIV cure research at the end of life: perspectives from long-term survivors of HIV in the United States.","authors":"Ali Ahmed, Jeff Taylor, Whitney Tran, Simran Swaitch, Samuel O Ndukwe, Rachel Lau, Kris H Oliveira, Stephanie Solso, Cheryl Dullano, Andy Kaytes, Davey Smith, Robert Deiss, Sara Gianella, Karine Dubé","doi":"10.1186/s12910-025-01253-x","DOIUrl":"https://doi.org/10.1186/s12910-025-01253-x","url":null,"abstract":"<p><strong>Introduction: </strong>Despite progress in antiretroviral therapy (ART), an effective cure for HIV remains out of reach. End-of-life (EOL) research studies involving individuals with a prognosis of six months or less offers an opportunity to advance cure science but has so far been limited to observational designs focused on HIV reservoirs. As interventional approaches at the EOL are now being considered, it is essential to assess their acceptability before moving forward. Understanding how long-term survivors (LTS) of HIV perceive these potential interventions, along with their motivations and ethical considerations, is critical to guiding the design of future EOL-HIV interventional research.</p><p><strong>Methods: </strong>We conducted in-depth qualitative interviews with 16 LTS of HIV from across regions in United States to examine their views on hypothetical interventional HIV cure research at the EOL. To ensure representation, we recruited participants through community-based organizations and HIV cure collaboratories using purposive-sampling. We conducted interviews via secure teleconferencing, transcribed the recordings, and used inductive thematic analysis to identify key themes related to motivations, acceptability, and ethical considerations surrounding interventional EOL HIV cure research.</p><p><strong>Results: </strong>Participants viewed hypothetical interventional HIV cure research at the EOL as a way to contribute to science, despite expecting no personal benefit. They prioritized autonomy and informed-choice in ethical participation. Many supported latency-reversing agents but raised safety concerns; in contrast, they viewed block-and-lock strategies as promising and less risky. Participants generally welcomed immune-based approaches, though some questioned their suitability for older adults near the EOL. LTS found cell and gene-based interventions innovative but expressed caution about safety and feasibility. While they valued the scientific potential of combination strategies, they noted their complexity and burden. Opinions on analytical treatment interruptions were mixed and depended on ethical safeguards, including medical oversight and reversibility. Willingness to participate in hypothetical HIV cure research at the EOL reflected individual health status, perceived burden, and personal values.</p><p><strong>Conclusions: </strong>LTS are willing to engage in interventional EOL HIV cure research but emphasize the importance of ethical safeguards and participant autonomy. As HIV cure research progresses, integrating LTS perspectives is critical to designing feasible, ethical, and scientifically impactful interventional studies at EOL.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"112"},"PeriodicalIF":3.1,"publicationDate":"2025-08-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12374411/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144978977","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Opportunities for a national genomic data governance framework in Australia: a systematic review.","authors":"Fabian Cannizzo, Miranda E Vidgen, Rebekah McWhirter, Alan Petersen, Margaret Otlowski, Marco Rizzi, Jasmine Hensley, Ainsley J Newson","doi":"10.1186/s12910-025-01273-7","DOIUrl":"10.1186/s12910-025-01273-7","url":null,"abstract":"<p><strong>Background: </strong>As with other countries, Australia is seeking to make efficient use of genomic data for use in research, clinical medicine and population health. However, to enable cross jurisdictional consistency in the management of and access to data, it will first need to establish a national framework for governing genomic data. To this end, ethical, legal and social issues are often discussed. However, the literature offers little evidence-based support for such a framework.</p><p><strong>Methods: </strong>To address this literature gap, we systematically reviewed two databases (Scopus and PubMed) for research articles that discussed issues and opportunities for enacting genomic data governance frameworks in the domains of research, genomic medicine and public (population) health in the Australian context.</p><p><strong>Results: </strong>Thirty-one relevant articles were included and were analysed using inductive content analysis. Our findings identified that opportunities for implementing a national genomic data governance framework concerned defining roles for patients in data governance, data management processes and increasing the public acceptance of genomic data use in healthcare and research. Additionally, they highlight differences in the opportunities and priorities for clinical and research genomics that hinder further advancement of data governance.</p><p><strong>Conclusions: </strong>Our synthesis of the current literature on genomic data governance suggests that the current focus on individual consent as the primary mechanism for protecting data subjects and different priorities in clinical and research governance need to be addressed. Given the significance of the role of consent procedures and differences in clinical and research data in generating a data governance framework, our findings hence reveal a critical gap in the research literature. Advancing a national genomic data governance framework will require greater consensus and clarity regarding the application of ethical principles across jurisdictions and institutions.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"111"},"PeriodicalIF":3.1,"publicationDate":"2025-08-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12355800/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144857105","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Impacts of mandatory clinical ethics consultation on resource utilization and ethical conflicts in critically ill patients: a comparison between medical and surgical intensive care units.","authors":"Yen-Ko Lin, Chao-Wen Chen, Yung-Sung Yeh, Chia-Ju Lin, Yu-Wen Huang, Yu-Chih Lin, Chau-Chyun Sheu","doi":"10.1186/s12910-025-01268-4","DOIUrl":"10.1186/s12910-025-01268-4","url":null,"abstract":"<p><strong>Background: </strong>Mandatory clinical ethics consultation (CEC) is initiated under specific circumstances when required by institutional policies. Medical and surgical intensive care units (ICUs) have various characteristics. Studies on whether mandatory CEC have different impacts on medical and surgical ICUs are limited. This study aimed to investigate the impacts of mandatory CEC on resource use and ethical conflicts as well as family member satisfaction regarding critically ill patients in medical and surgical ICUs and their predicting factors.</p><p><strong>Results: </strong>This combined retrospective and prospective cohort study was conducted at a tertiary academic university-affiliated medical center. Patients admitted to the adult ICUs and had CEC between January 1, 2013, and December 31, 2020, were eligible. A total of 1,150 adult patients were included, with 822 in the medical and 328 in the surgical ICU. After the implementation of mandatory CEC policy, resource use in both ICUs deceased biannually. Medical ICU has significantly longer total length of stay (LOS), days of ventilator use, and days from ICU admission to ethics consultation than surgical ICU. Advanced cancer and the episode of cardiac arrest mainly predicted ICU LOS and resource use in the medical ICU, whereas the Glasgow Coma Scale (GCS) score was the main predicting factor for surgical ICU. Secular trends for incidence rates of ethical conflicts decreased biannually in both ICUs. In general, higher incidence rates of ethical conflicts were observed in the surgical ICU. The predicting factors for ethical conflicts in the medical ICU included age, patients with advanced cancer, patients who received inotropes or vasopressors, and the GCS score, whereas in the surgical ICU, the marital status and GCS score were the main predicting factors. Family members in both ICUs were highly satisfied with the CEC team.</p><p><strong>Conclusion: </strong>Medical and surgical ICUs exhibited different impacts on resource use and ethical conflicts after the implementation of mandatory CEC policy. Our results provide CEC and clinical teams with guidelines to approach the distinct issues within various specialties. The institution should consider implementing mandatory CEC policy and developing special educational and training programs for various specialties to provide the best quality of end-of-life care in the ICUs.</p><p><strong>Trial registration: </strong>The ClinicalTrials.gov Identifier is NCT04926610.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"110"},"PeriodicalIF":3.1,"publicationDate":"2025-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12318408/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144769387","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The ethics and economics of organoid commercialization: potential donors' perspectives.","authors":"Hanna de Groot, Manon van Daal, Regina W Hofland, Inez Bronsveld, Karin R Jongsma, Renske M T Ten Ham","doi":"10.1186/s12910-025-01269-3","DOIUrl":"10.1186/s12910-025-01269-3","url":null,"abstract":"<p><p>Advancing organoid technology requires human tissue donations and collaboration between researchers and commercial parties. However, many potential donors have reservations about commercial involvement in organoid research. To better understand these reservations, we conducted four focus groups with potential donors. Two focus groups were held with individuals with cystic fibrosis (n = 10). One focus group included individuals with neurodegenerative diseases (Parkinson's or Huntington's disease) (n = 4) and the other consisted of individuals with neurological disease (epilepsy) (n = 5). Four themes were identified: (1) benefits and concerns regarding commercial involvement, (2) trust in involved parties in research, (3) control over commercial parties and (4) appreciation of donors. To address these themes, we recommend that researchers and commercial parties communicate transparently and effectively, actively engage and appreciate donors, implement robust oversight mechanisms and (re)establish trust and trustworthiness through responsible practices. These considerations can help researchers and commercial parties work toward responsible and sustainable organoid research.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"109"},"PeriodicalIF":3.1,"publicationDate":"2025-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12309163/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144746050","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Translational bioethics in nursing: a conceptual review of definitions, applications and ethical implications.","authors":"Frederick Acheampong Nimo, Abigail Gyamfi-Samakome, Esther Naana Gyan, Richard Argoh, Godson Obeng Ofori, Patience Fakornam Doe, Christian Makafui Boso","doi":"10.1186/s12910-025-01264-8","DOIUrl":"10.1186/s12910-025-01264-8","url":null,"abstract":"<p><strong>Background: </strong>Bioethics is fundamental in healthcare, guiding ethical decision-making and patient care. Translational bioethics (TB) aims to bridge the gap between ethical theories and real-world practice, including nursing. However, the concept of TB has not been clearly examined yet. Therefore, this concept analysis was done to provide clarity and practical meaning to the concept of translational bioethics within the context of nursing.</p><p><strong>Methods: </strong>Walker and Avant's concept analysis framework was employed to examine TB and apply it to nursing practice. A systematic search of electronic databases, including PubMed, Google Scholar, and PubMed Central, was conducted. Papers were screened and twenty-five eligible full-text records included in analysis.</p><p><strong>Results: </strong>The analysis identified four key defining attributes of TB, including bridging the theory-practice gap, ethical evaluation and decision making, interdisciplinary collaboration, social responsibility and societal impact. Antecedents included ethical dilemmas, identifying theory-practice gaps, and commitment to real-world impact. The consequences of TB encompassed improved patient care, reduction of ethical conflicts, positive social impact, and informed policy and decision making.</p><p><strong>Conclusions: </strong>This study provided a clear conceptual model of TB, offering insights into its antecedents, attributes, and consequences. Translational bioethics can be defined as an approach that bridges ethical theory and practice through research, interdisciplinary collaboration, and a focus on contextual ethical evaluation and decision making, aiming for socially responsible and impactful outcomes.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"108"},"PeriodicalIF":3.1,"publicationDate":"2025-07-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12302458/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144735536","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Effects of ethics communication in health care: a cluster randomised controlled trial.","authors":"Brännström Margareta, Isaksson Ulf, Fischer Grönlund C","doi":"10.1186/s12910-025-01270-w","DOIUrl":"10.1186/s12910-025-01270-w","url":null,"abstract":"<p><strong>Background: </strong>Studies show that healthcare professionals encounter ethically difficult situations in everyday clinical practice, and there is a need for interprofessional communication in organised forms. Ethics communication in groups (ECG), based on Habermas's theory of communicative actions, is a form of support for interprofessional communications about ethical issues. The 'one to five method' is a practical tool for healthcare professionals with education in ethics to facilitate ECG in everyday clinical practice.</p><p><strong>Research aim: </strong>To evaluate the effects of organised ECG using the 'one to five' method for health care professionals concerning moral distress and ethical climate at wards with round-the-clock care compared with a control group.</p><p><strong>Research design: </strong>This was a prospective cluster randomised study with an open, non-blinded design.</p><p><strong>Methods: </strong>Nine wards with different medical specialisations at one university hospital were purposefully and then randomly allocated to an intervention group (IG) (n = 5) and a control group (CG) (n = 4). An ECG was performed monthly for six months in the intervention group. Prospective assessments were made at 3 and 6 months using the Measure of Moral Distress-Healthcare Professionals (MMD-HP), Moral Distress Thermometer (MDT), and the Swedish Ethical Climate Questionnaire (SwECQ).</p><p><strong>Result: </strong>Between-group analyses showed no significant differences in moral distress over time. Within-group analysis revealed that the intervention group scored lower moral distress concerning clinical causes at the patient level at the 3-month measurement point but returned to the same level as the control group at six months. The ethical climate was rated higher in the intervention group at 3 and 6 months.</p><p><strong>Conclusion: </strong>Participation in ECG likely fosters shared values and an enhanced ethical climate, though no significant differences in moral distress were observed. Moral distress may persist despite interventions, but open dialogue and professional growth can foster moral resilience. This study found a positive relationship between an ethical climate and participation in ethics communication groups (ECG) using the 'one to five method.' However, the small sample size limited statistical power. Future research should include larger-scale, multicentre studies and qualitative research to explore experiences with ECG.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov : NCT05146102 (2021-11-05).</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"106"},"PeriodicalIF":3.1,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12297816/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144719196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Family satisfaction with the end-of-life discussions and resuscitation orders for patients with severe COVID-19: a multicenter study in Saudi Arabia.","authors":"Mobeireek A, Al-Jahdali H, AlJohaney A, Al-Rajhi N, Al-Fadhli S, Lababidi H, Al-Firm A, AlFattani A, Ahmed L","doi":"10.1186/s12910-025-01248-8","DOIUrl":"10.1186/s12910-025-01248-8","url":null,"abstract":"<p><strong>Background: </strong>Despite the significant mortality, data on end-of-life (EoL) discussions during COVID-19 pandemic are scarce. Health care providers had to cope with significant challenges, particularly overcoming barriers to effective communication with patients and their families, and lack of information on therapy and prognosis. This study was undertaken to assess the satisfaction of close family members (CFMs) with EoL discussions for patients hospitalized with severe COVID-19 infection.</p><p><strong>Methods: </strong>The study was conducted in five major hospitals in Saudi Arabia. Medical charts of consecutive patients who died from COVID-19 complications were retrospectively reviewed. Demographic and clinical data were collected, and communication with close family members (CFMs) about clinical decisions were evaluated. A follow-up telephone interview was conducted using a validated Arabic questionnaire to evaluate satisfaction of CFMs with the EoL discussions prior death.</p><p><strong>Results: </strong>EoL discussions were documented in less than half (67, 49.28%) and were often delayed (the median time 19.75 days [range 1-119] after admission. However, in the interviews of the CFMs, 109 of 136 (80.15%) acknowledged that physicians had shared with them information regarding the medical condition of the patient. Most of these discussions were conducted with the CFMs rather than the patients. Do Not Attempt Resuscitation orders were implemented in half of the patients, and most CFMs (70%) felt they were appropriate. Satisfaction levels for physicians, were as follows: 61.68% for the adequacy of information provided, 60.00% for time spent, and 61.49% for empathy from physicians. A strong correlation existed between the time spent and both the adequacy of information (rs = 0.89, p < 0.001) and empathy (rs = 0.82, p < 0.001). As for nursing performance, satisfaction was 47.83% for information, 48.06% for time, and 55.81% for empathy. Physicians' scores were significantly higher than nurses on information sharing (P = 0.022) and time spent (P = 0.05), but there was not significant difference with regards to empathy.</p><p><strong>Conclusion: </strong>Despite the challenges associated with the pandemic, there is room for improvement in EoL discussions, particularly the early introduction of personalized goal-oriented care plans. Defining roles and fostering interdisciplinary collaboration between healthcare professionals may enhance satisfaction of patients and their families.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"107"},"PeriodicalIF":3.1,"publicationDate":"2025-07-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12297854/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144719207","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics of overtreatment and undertreatment in older adults with cancer.","authors":"Clark DuMontier, William Dale, Anna C Revette, Jane Roberts, Ameya Sanyal, Neha Perumal, Eric C Blackstone, Hajime Uno, Mary I Whitehead, Lewis Mustian, Tammy T Hshieh, Jane A Driver, Gregory A Abel","doi":"10.1186/s12910-025-01255-9","DOIUrl":"10.1186/s12910-025-01255-9","url":null,"abstract":"<p><strong>Background: </strong>Over-/undertreatment are pervasive in older adults with cancer, and challenges arise in applying the principles of bioethics: beneficence, nonmaleficence, justice, and patient autonomy. The objective of this study was to determine whether these ethical principles relate to over-/undertreatment for older adults, and how tensions among the principles may contribute.</p><p><strong>Methods: </strong>We conducted a modified Delphi study with 13 experts in biomedical ethics for iterative rounds of data collection. In the first round, we presented via electronic questionnaire our previously published definitions of over-/undertreatment in older adults with cancer. We then asked which ethical principles related to each definition, followed by how over-/undertreatment might arise from conflicts among different ethical principles. Consensus for each question was defined as ≥ 75% of experts answering \"agree\" or \"strongly agree\". The second round consisted of a virtual discussion with nine of the panel experts led by a qualitative researcher to summarize round one results and review questions that did not reach consensus, followed by a second questionnaire including those questions.</p><p><strong>Findings: </strong>Experts reached consensus that beneficence, non-maleficence, and autonomy were related to over-/undertreatment in older adults with cancer. Consensus was reached (92%) that overtreatment can occur when oncologists overemphasize beneficence valuing the potential benefit of cancer treatments, while underemphasizing non-maleficence with respect to treatment toxicities. Consensus was also reached (85%) that undertreatment reflects a lack of justice in equitable consideration of cancer treatments that could provide similar net benefits in older adults compared to younger adults. Lastly, consensus was reach that, in most cases, it is unethical to make a treatment recommendation without (1) formal assessment of patient frailty (e.g., via a geriatric assessment) or (2) the opportunity for the patient to share their values, goals, and preferences.</p><p><strong>Interpretation: </strong>Our findings elucidate the ethical principles underpinning over- and undertreatment in older adults with cancer.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"105"},"PeriodicalIF":3.1,"publicationDate":"2025-07-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12291383/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144709990","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.","authors":"Yunqi Li, Deborah J Bowen, Joon-Ho Yu","doi":"10.1186/s12910-025-01170-z","DOIUrl":"10.1186/s12910-025-01170-z","url":null,"abstract":"<p><strong>Background: </strong>International collaboration on genetic/genomic studies has expanded dramatically. Informed consent remains a cornerstone for protecting participant autonomy. Over the past few decades, guidelines, recommendations, and theoretical discussions have been published on the informed consent process in cross-cultural contexts, particularly in Africa. These resources suggest best practices-ranging from assessing participant comprehension to engaging local communities. However, it remains unclear how well the current practices address the full range of informed consent challenges encountered by the stakeholders.</p><p><strong>Methods: </strong>We performed a systematic literature review of empirical studies that explored stakeholders' perspectives, primarily research participants and researchers, on informed consent in the context of international genetic/genomic research in countries of Africa. We followed the PRISMA guideline and used thematic analysis for data synthesis and analysis.</p><p><strong>Results: </strong>Twenty-four relevant articles were identified and reviewed for five bioethical issues: (1) comprehension of consent information, (2) voluntary participation, (3) consent elements, (4) consent model, and (5) community engagement. Different levels of understanding and recall over different consent elements, and multiple factors associated with comprehension were observed. Voluntary participation could be influenced by misconception, monetary and healthcare compensation, and previously established trust with the research team. Many participants show less interest in certain consent elements, such as biobanking, data sharing, and future use, but more in the section on benefits. Returning results had potential advantages in building trust between participants and the research team; however, the most appropriate way to return results is under discussion. There was also conversation over consent models (broad, tired, and dynamic) on their balance between autonomy and practicality. Finally, many articles ascertained the value of community engagement and encouraged researchers to consider local cultural beliefs, social stigma, and decision-making habits when designing the consent process.</p><p><strong>Conclusion: </strong>We observed an increased interest in the ethical conduct of the informed consent process under international genetics/genomics studies in recent decades. Awareness and attention to these issues are needed to develop more appropriate consent strategies that could further safeguard the rights and welfare of local participants and support the smooth conduct of research.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"99"},"PeriodicalIF":3.0,"publicationDate":"2025-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12275316/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144669040","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Views and attitudes about the offer of NIPT: a qualitative study of UK healthcare professionals.","authors":"Peter D Young, Katherine M Sahan","doi":"10.1186/s12910-025-01227-z","DOIUrl":"10.1186/s12910-025-01227-z","url":null,"abstract":"<p><strong>Background: </strong>Healthcare professionals have ethical duties to provide information according to conceptions of the doctor-patient relationship, and one way this responsibility is established in practice is by UK guidance on shared decision making. Non-invasive prenatal testing (NIPT) is a relatively new prenatal screening test offered by the UK National Health Service (NHS) since 2021. Since NIPT has different characteristics when compared to other prenatal screens and tests-such as the combined test and amniocentesis-it is not clear how information should be offered in a pre-test consultation. Key to answering this question is to understand more about the HCP-patient relational dynamics surrounding the offer of NIPT. Previous studies have focused on the woman's role in this; the views and attitudes of pregnant women about decision making in the offer of NIPT has been interrogated elsewhere. However, little attention has been given to the views and attitudes of healthcare professionals (HCPs) and how those views might shape the dynamics of how NIPT is offered and how the decision-making process goes.</p><p><strong>Methods: </strong>This study carried out qualitative interviews with 20 UK HCPs who offered NIPT and/or provided counselling for NIPT. Findings from the interviews were analysed and themes were developed about how HCPs reported they offered NIPT and their reasons for this.</p><p><strong>Results: </strong>HCPs say they conveyed information about the nature of NIPT to women when offering the test. This includes how HCPs say they described the risks of NIPT, their views about clarifying the non-diagnostic nature of NIPT, how they explained NIPT accuracy to women, and how they stressed that decisions about test options were up to the patient. HCPs also reported how they distinguished NIPT from other screens and tests and described NIPT as a different category of screening test. Furthermore, many HCPs say they either provided predetermined information to patients or reported being patient-led in the offer.</p><p><strong>Conclusions: </strong>This study explores how HCPs reported the offer of NIPT and also how they thought the offer should go, by giving their reasons for what they report. This indicates their normative sense of which information ought to be given (that is, what they believed was critical to provide for decision making). It also indicates which aspects within the offer they believed should be emphasised or played down. The accounts reported here of HCPs' experiences raise questions about how information should be provided to women in the offer of NIPT. This might help us establish better practices of informing women who use NIPT. Results of this study have a number of implications for the ethics of prenatal testing in practice. Firstly, they indicate a need for better guidance and education about how to discuss certain informational aspects within the offer such as NIPT characteristics and statistics. Secondly","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"101"},"PeriodicalIF":3.1,"publicationDate":"2025-07-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12275380/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144669041","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}