BMC Medical Ethics最新文献

{"title":"Surgical consent, perception of the patients who underwent a surgical operation in the Kurdistan region, Iraq.","authors":"Dawan Jamal Hawezy","doi":"10.1186/s12910-025-01218-0","DOIUrl":"https://doi.org/10.1186/s12910-025-01218-0","url":null,"abstract":"<p><strong>Introduction: </strong>Patient satisfaction is a significant measure of healthcare service quality as the patient is the center of any surgical procedure. Patient satisfaction refers to the extent to which a patient's expectations of optimal care align with their perception of the care received. Patient satisfaction during informed consent is enhanced when written informed consent is accompanied by verbal consent in the preoperative period. Satisfied patients are more inclined to adhere to therapy, engage actively in their care, utilize healthcare services, willingly partake in decision-making, and remain with a healthcare provider. This research examines the practical and ethical considerations of obtaining informed consent during surgical procedures. To better understand and make informed decisions, this study aims to assess the efficacy of present consent methods and pinpoint obstacles patients encounter.</p><p><strong>Methodology: </strong>A cross-sectional study was conducted from April to December 2024. Data were gathered by second-year students from Koya University's Faculty of General Medicine by interviewing postoperative patients who had undergone general surgical procedures. The results were entered into a Google form and analyzed using SPSS27.</p><p><strong>Results: </strong>In interviews with participants, 430 out of 572 patients (75%) indicated trust in their surgeons performing the surgery, while 525 patients (91%) expressed respect for their surgeons' opinions. However, 41% (239 patients) reported not reading the informed consent form, and a similar percentage denied that the details of the form were explained by the medical staff responsible for the surgery as there are some medical terms or situations in the form that are challenging to assume if not explained.</p><p><strong>Conclusion: </strong>Compared to others, participants with a higher educational level sought extensive time from the responsible surgeons to discuss every detail of the surgery before signing the informed consent, with a statistically significant difference observed. A similar difference was noted between private and public hospitals.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"55"},"PeriodicalIF":3.0,"publicationDate":"2025-05-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12046714/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144043319","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":"A scoping review of the ethical issues in gender-affirming care for transgender and gender-diverse individuals.","authors":"Shilpa Surendran, Hui Jin Toh, Teck Chuan Voo, Chuan De Foo, Michael Dunn","doi":"10.1186/s12910-025-01216-2","DOIUrl":"https://doi.org/10.1186/s12910-025-01216-2","url":null,"abstract":"<p><strong>Background: </strong>Globally, there is a notable increase in recognising the health needs of transgender and gender-diverse individuals. As a result, gender-affirming care services are evolving and expanding in many parts of the world, and this has provoked increased debate on various aspects of the interventions that comprise such care. Resolution of these debates depends on addressing important ethical issues. This scoping review aims to identify the key ethical issues and arguments regarding gender-affirming care across various medical interventions.</p><p><strong>Methods: </strong>We searched Embase, PubMed and SCOPUS to identify peer-reviewed publications that could meet some eligibility criteria such as publications presenting an ethical issue, argument, or principle related to gender-affirming care for transgender and gender-diverse individuals and having been published from 2012 to 2023. We applied Arksey and O'Malley's scoping review framework. The text of included publications was analysed inductively.</p><p><strong>Results: </strong>Eighty-two publications were identified for inclusion. Sixty-two publications (76%) were published in or after 2019, and 20 (24%) between 2012 and 2018. Five aspects of gender-affirming care that draw ethical analysis or debates were identified: decision-making process, guideline and model of care, deletion of health data, funding, and fertility preservation and services. Ethical issues and arguments were identified within each aspect of care. The arguments are organised according to the four principles of biomedical ethics: autonomy, beneficence, non-maleficence and justice.</p><p><strong>Conclusion: </strong>This scoping review captures the key ethical issues in various aspects of gender-affirming care. There were substantial differences in the depth to which each aspect of gender-affirming care was discussed, with ethical issues in decision-making processes receiving the most attention, and deletion of health data given the least attention. This review also characterises the dominant ethical arguments and underlying principles used to justify positions on the issues. Within each ethical issue, the four principles of biomedical ethics featured commonly, but were applied very differently and accorded unequal weighting. Additionally, in some discussions, arguments supporting medical interventions were given more attention; in others, the rationales opposing medical interventions were dominant. Perhaps unsurprisingly, there was limited resolution and increasing disagreement. Important constraints in the methodologies of argumentation used to support or oppose aspects of gender-affirming care were also identified.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"54"},"PeriodicalIF":3.0,"publicationDate":"2025-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12042320/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144060915","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":"Confidentiality and family involvement in healthcare: a mixed-method approach of physicians' perspectives in Jordan.","authors":"Reema Karasneh, Sayer Al-Azzam, Mohammad Nusair, Abdel-Hameed Al-Mistarehi, Mamoon A Aldeyab, Islam Massad","doi":"10.1186/s12910-025-01213-5","DOIUrl":"https://doi.org/10.1186/s12910-025-01213-5","url":null,"abstract":"<p><strong>Background: </strong>With the evolving person-centered care approach, the importance of family involvement is increasingly recognized to promote comprehensive treatment. However, determining when and how to disclose patient information to families without compromising privacy rights while ensuring optimal patient care poses an ethical challenge. Therefore, we aimed to explore physicians' attitudes regarding sharing patient data with family members and protecting patient information.</p><p><strong>Methods: </strong>A convergent (i.e., concurrent) mixed-methods approach was employed, integrating quantitative data collected through a questionnaire distributed to physicians and qualitative data were obtained through semi-structured interviews.</p><p><strong>Results: </strong>Data from 221 physicians in Jordan revealed that only 48% would consistently seek patient consent before data disclosure, with the majority agreeing that they would share patient information with families under circumstances where family assistance is crucial (n = 180, 81.4%) or when the patient is unable to understand the information (n = 181, 81.9%). This was justified by the active involvement of family members in the treatment process (n = 182, 81.4%). Qualitative data from 14 physicians were obtained, and their perspectives revealed two main themes: 1) \"Attitudes Toward Data Sharing with Patients' Families,\" which encompassed \"inability of patients to make decisions,\" \"family involvement due to concerns,\" and \"pressure from family members and 2) \"Significance of Patient Confidentiality \" which included \"building patient trust\" and \"preventing harm to patients.\"</p><p><strong>Conclusion: </strong>A balanced approach that addresses complexities in patient data disclosure and family involvement in healthcare is necessary for fostering trust, supporting informed decision making and facilitating better health outcomes.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"52"},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12036295/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144034103","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":"Racial issues in psychiatry: a thematic analysis of an initial health equity educational activity for medical students.","authors":"Paige Pickerl, Tanya Sorrell, Mennefer Blue, Kamaria Patterson, Neeral Sheth, Sahara Givens","doi":"10.1186/s12910-025-01215-3","DOIUrl":"https://doi.org/10.1186/s12910-025-01215-3","url":null,"abstract":"<p><strong>Introduction: </strong>Current research documents both the historical impact of racism in healthcare as well as studies piloting antiracist interventions as part of medical training to ameliorate its stigma, bias, and consequences in medicine. The purpose of this study was to qualitatively analyze the impact of a one session lecture surrounding racial issues in psychiatry on third-year medical students' thoughts and reflections surrounding the content.</p><p><strong>Methodology: </strong>Remote methodologies were used to engage medical students in a lecture created by a major University's Substance Use Disorder Center of Excellence to address the legacy of racial issues in psychiatry as well as present interventions. The team collected anonymous evaluations via anonymous chat submission after each lecture. Qualitative evaluation data were compiled from 108 students across 11 sessions over the course of a year. The team reviewed major and minor themes and synthesized following the Standards for Reporting Qualitative Research (SRQR) guidelines for qualitative reporting.</p><p><strong>Results: </strong>We identified the following five themes:1) appreciation and notes on the content itself; 2) how the information presented can impact future clinical care; 3) the interconnectedness of social determinants of health and racism; 4) recognizing power dynamics with patients; and 5) opportunities for future education.</p><p><strong>Conclusion: </strong>Information compiled both from participating students and the available literature can inform future education efforts to build opportunities for antiracist training in medical education.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"53"},"PeriodicalIF":3.0,"publicationDate":"2025-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12039112/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144059037","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":"Diversity in decentralized clinical trials: prioritizing inclusion of underrepresented groups.","authors":"Tessa I van Rijssel, Johannes J M van Delden, Bart Lagerwaard, Mira G P Zuidgeest, Ghislaine J M W van Thiel","doi":"10.1186/s12910-025-01211-7","DOIUrl":"https://doi.org/10.1186/s12910-025-01211-7","url":null,"abstract":"<p><strong>Background: </strong>The importance of more diversity of study populations in clinical trials is currently widely acknowledged. Decentralized clinical trial (DCT) approaches are presented as a potential means to broaden diversity by eliminating several barriers to participation. However, the precise meaning of, and objectives related to diversity in DCTs remain unclear. Diversity runs the risk of becoming a 'buzzword': widely acknowledged to be important, yet prone to multiple interpretations and challenging to implement in practice. We argue that the aim of increasing diversity in clinical trials requires clear and well-substantiated specifications.</p><p><strong>Methods: </strong>We analyze the concept of diversity and the ethical requirements surrounding fair participant selection within the context of clinical research, in order to further specify and operationalize the aim of increasing diversity in the context of DCTs.</p><p><strong>Results: </strong>Through analyzing the concept of diversity and ethical requirements for fair participant selection, we propose that diversity should be specified in a way that improves the position of the groups that are currently most underrepresented in the research context. In practice, this entails that, in order to contribute to diversity, the selection of participants should prioritize (i) gaining scientific knowledge on groups for which this is lacking, and (ii) inclusion of underrepresented groups in research when appropriate considering a study's objectives, and risks and benefits.</p><p><strong>Conclusions: </strong>Our analysis facilitates translating the aim of increasing diversity with DCTs to more specific and actionable objectives for recruitment and inclusion. Moreover, it contributes to a further specification of the concept of diversity and fair participant selection in research contexts.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"51"},"PeriodicalIF":3.0,"publicationDate":"2025-04-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12020247/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144045409","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":"Readability of health research informed consent forms: case of the National Health Research Ethics Committee in Tanzania.","authors":"Renatha Kato, Renatha Joseph, Lazaro Haule, Mwanaidi Kafuye","doi":"10.1186/s12910-025-01200-w","DOIUrl":"https://doi.org/10.1186/s12910-025-01200-w","url":null,"abstract":"<p><strong>Background: </strong>Obtaining informed consent is the practice of respect for persons that gives the right to participants to make autonomous decisions about research participation. The difficult-to-read research informed consent forms (RICFs) hinder comprehension and can expose participants to harm. This study aims to assess the readability of health RICFs for studies approved by the National Health Research Ethics Committee (NatHREC) in Tanzania.</p><p><strong>Methods: </strong>We used a retrospective cross-sectional study design. A total of 266 RICFs were sampled from the NatHREC database using stratified and systematic random sampling strategies. The readability of RICFs was assessed using the Flesch Reading Ease (FRE) and Flesch-Kincaid Readability Grade Level (FKRGL) formulas available in Microsoft Word Office and by manual check. Data were collected using the assessment checklist, analyzed, and presented with SPSS and MS Excel software.</p><p><strong>Results: </strong>Out of 266 RICFs assessed, 65.4% had the recommended page numbers, 81.6% had longer sentences, and 80.5% were difficult to read, necessitating a person to acquire a US grade 10 (Form Four educational level in Tanzania) to understand the presented information. Pearson's correlation coefficient with p-values of < 0.001 and 95% confidence level disclosed that sentence lengths in the RICFs had a statistical association with the difficult reading levels obtained.</p><p><strong>Conclusion: </strong>Findings from this study showed that most of the RICFs were concise in terms of page numbers and word count but had long and difficult sentences. Researchers should assess the readability of RICFs before submitting them for ethical approval. Research Ethics Committees (RECs) should consider inclusion of RICFs readability measurements in the Ethics Guidelines for Health Research. The study recommends further studies to assess the Kiswahili versions of RICFs to determine if the results obtained in this study apply to Kiswahili texts.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"50"},"PeriodicalIF":3.0,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12016158/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057522","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":"Ethical implications related to processing of personal data and artificial intelligence in humanitarian crises: a scoping review.","authors":"Tino Kreutzer, James Orbinski, Lora Appel, Aijun An, Jerome Marston, Ella Boone, Patrick Vinck","doi":"10.1186/s12910-025-01189-2","DOIUrl":"https://doi.org/10.1186/s12910-025-01189-2","url":null,"abstract":"<p><strong>Background: </strong>Humanitarian organizations are rapidly expanding their use of data in the pursuit of operational gains in effectiveness and efficiency. Ethical risks, particularly from artificial intelligence (AI) data processing, are increasingly recognized yet inadequately addressed by current humanitarian data protection guidelines. This study reports on a scoping review that maps the range of ethical issues that have been raised in the academic literature regarding data processing of people affected by humanitarian crises.</p><p><strong>Methods: </strong>We systematically searched databases to identify peer-reviewed studies published since 2010. Data and findings were standardized, grouping ethical issues into the value categories of autonomy, beneficence, non-maleficence, and justice. The study protocol followed Arksey and O'Malley's approach and PRISMA reporting guidelines.</p><p><strong>Results: </strong>We identified 16,200 unique records and retained 218 relevant studies. Nearly one in three (n = 66) discussed technologies related to AI. Seventeen studies included an author from a lower-middle income country while four included an author from a low-income country. We identified 22 ethical issues which were then grouped along the four ethical value categories of autonomy, beneficence, non-maleficence, and justice. Slightly over half of included studies (n = 113) identified ethical issues based on real-world examples. The most-cited ethical issue (n = 134) was a concern for privacy in cases where personal or sensitive data might be inadvertently shared with third parties. Aside from AI, the technologies most frequently discussed in these studies included social media, crowdsourcing, and mapping tools.</p><p><strong>Conclusions: </strong>Studies highlight significant concerns that data processing in humanitarian contexts can cause additional harm, may not provide direct benefits, may limit affected populations' autonomy, and can lead to the unfair distribution of scarce resources. The increase in AI tool deployment for humanitarian assistance amplifies these concerns. Urgent development of specific, comprehensive guidelines, training, and auditing methods is required to address these ethical challenges. Moreover, empirical research from low and middle-income countries, disproportionally affected by humanitarian crises, is vital to ensure inclusive and diverse perspectives. This research should focus on the ethical implications of both emerging AI systems, as well as established humanitarian data management practices.</p><p><strong>Trial registration: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"49"},"PeriodicalIF":3.0,"publicationDate":"2025-04-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11998222/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144058846","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":"Third-party refusal of medical treatment - a critical analysis of case report from Islamic ethical perspectives.","authors":"Mohamad Iqhbal Bin Kunji Mohamad, Mohammad Naqib Hamdan, Aimi Nadia Mohd Yusof","doi":"10.1186/s12910-025-01209-1","DOIUrl":"https://doi.org/10.1186/s12910-025-01209-1","url":null,"abstract":"<p><strong>Background: </strong>Informed consent is a bedrock of ethical medical practice; however, scenarios in which a third party refuses life-saving treatment for an incapacitated patient present a unique and underexplored ethical quandary. Such conflicts are especially challenging when cultural or religious values influence decisions. In Muslim-majority contexts, healthcare practitioners often grapple with whether and how Islamic jurisprudence might justify overriding a guardian's refusal. While numerous case reports exist on patient-centred autonomy and consent, few specifically address the intersection of parental refusal, religious and ethical frameworks, and urgent clinical interventions. By examining this case and situating it within Islamic legal reasoning, we highlight a novel angle that offers healthcare providers religious insight and practical guidance.</p><p><strong>Case presentation: </strong>We present the case of an 18-year-old Muslim female with no prior significant medical history who arrived at the emergency department unconscious and in impending respiratory arrest. The clinical team recommended intubation to prevent critical deterioration. However, the patient's sole legal guardian-her mother-adamantly refused consent for endotracheal intubation and other potentially life-saving measures, including CPR, citing personal mistrust and past negative healthcare experiences. In response, the team adopted a less effective non-invasive ventilation strategy and pursued repeated discussions to understand the mother's rationale. Despite these efforts, the patient's trajectory only improved gradually without the recommended definitive intervention. The patient, once conscious, deferred decision-making entirely to her mother. Subsequent readmissions repeated this pattern of refusal and partial treatment acceptance. Ultimately, the patient recovered sufficiently for discharge, though underlying risk factors remained poorly addressed as she defaulted on her subsequent follow-up appointment.</p><p><strong>Conclusions: </strong>This case underscores the tension between guardian decisions, patient welfare, and religious-ethical principles. Our analysis reveals a principled basis for prioritising patient well-being over third-party refusal by examining Islamic jurisprudential rulings on consent. The insights from this case could inform more religio-culturally sensitive policies and strengthen clinical decision-making frameworks in contexts where religious norms significantly shape healthcare choices.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"48"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11993996/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144065272","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 high-priority ethical issues of advanced paternal age: perspectives from a panel of experts in the fields of men reproduction and family building.","authors":"Vincent Couture, Émy Coiteux, Marianne Beaulieu, Timothey Bédard, Kévin Lavoie","doi":"10.1186/s12910-025-01202-8","DOIUrl":"https://doi.org/10.1186/s12910-025-01202-8","url":null,"abstract":"<p><strong>Background: </strong>Research shows that the age of fathers at the time of conception is correlated with detrimental effect for the health of the future offspring. This situation raises ethical questions regarding the priority of the principle of reproductive autonomy of men of advanced age over the well-being of their future offspring. This problem leads to other normative implications such as the value of introducing limits to the use of medically assisted reproduction, and the development of public health interventions. For the moment, this ethical reflection is mostly speculative and calls to open up the discussion. The aim of this research was to survey experts, working in related fields to the topic of advanced paternal age (APA), regarding the top priority ethical issues of this emerging subject.</p><p><strong>Methods: </strong>We recruited experts concerned by APA with backgrounds in health sciences, ethics, social work and reproductive medicine. We conducted a modified e-Delphi panel that lasted three rounds to build a consensual list of issues. The last round took the form of structured interviews exploring the results of the previous rounds.</p><p><strong>Results: </strong>The top four issues according to the panel are: (1) Should APA be included as a criterion for prenatal genetic screening? (2) Should we raise awareness on reproductive health in relation to the age of fathers? (3) How can health-care providers support patients in the context of APA? (4) How can research inform the public without stigmatizing fathers of advanced age?</p><p><strong>Conclusions: </strong>These exploratory results suggest that the issues of how to inform various audiences properly on APA are important concerns for experts.</p><p><strong>Clinical trial number: </strong>Not applicable.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"46"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11992766/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144006771","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 research relationship: participant perspectives on consent in biobanking.","authors":"Rachel Thompson, Kate Lyle, Gabrielle Samuel, Jo Holliday, Fenella Starkey, Susan Wallace, Anneke Lucassen","doi":"10.1186/s12910-025-01199-0","DOIUrl":"https://doi.org/10.1186/s12910-025-01199-0","url":null,"abstract":"<p><strong>Background: </strong>This paper examines challenges associated with the governance of large-scale biobanks. As the collection and interrogation of population-scale data is increasingly positioned as a route to new understandings of health and disease, large-scale biobanks are becoming essential elements of research infrastructure. However, their longitudinal nature presents challenges for governance, particularly in relation to consent. Typically, participants agree to specific activities at recruitment, but evolving technologies make it difficult to anticipate future research applications at this time. Using a case study from UK Biobank, we demonstrate how trying to reconcile new research activities with old consent risks overlooking critical ethical issues -particularly how the proposed activity aligns with participants' understanding and expectation of biobank research.</p><p><strong>Methods: </strong>We conducted focus groups with UK Biobank participants using individual and group exercises to explore their views on consent and different types of research on their samples and data.</p><p><strong>Results: </strong>Our findings show that participants locate responsibility for research decisions with the biobank, rather than seeking control through their consent. They perceive their consent not as a one-off agreement but as the `opening act' for a research relationship with the biobank that can be continued through communication.</p><p><strong>Conclusions: </strong>Focussing on the ongoing research relationship -and the practices that sustain it- is more important than the specific wording on consent forms signed at recruitment. We argue this will be more effective in meeting participant expectation as well as supporting ethical research.</p>","PeriodicalId":55348,"journal":{"name":"BMC Medical Ethics","volume":"26 1","pages":"47"},"PeriodicalIF":3.0,"publicationDate":"2025-04-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11992699/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144028129","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}