Journal of empirical research on human research ethics : JERHRE最新文献

{"title":"\"We Don't Always Know What we are Missing.\" Research Teams' Perspectives on the Recruitment of Adults with Intellectual and Developmental Disabilities in General Population Research.","authors":"Susan Racine Passmore, Morgan N Medina, Clara Mack, Madisin Randolph, Karla K Ausderau","doi":"10.1177/15562646251400490","DOIUrl":"10.1177/15562646251400490","url":null,"abstract":"<p><p>Ensuring that research participants accurately reflect patient populations is critical for the equitable distribution of the benefits and burdens of studies; however, many groups experiencing health disparities remain underrepresented in research. This study interviewed research team members (n = 25) interested in inclusive recruitment to understand their perspectives on engaging adults with intellectual and developmental disabilities in general population research. Team-based thematic analysis revealed barriers to the inclusion of adults with intellectual and developmental disabilities including 1) use of direct and indirect exclusionary practices, 2) lack of knowledge and skills, 3) reliance on ad hoc accommodations, 4) perceptions that including adults with intellectual disabilities in research lacks scientific value, and 5) beliefs that people with intellectual and developmental disabilities are not able or willing to participate. However, while team members acknowledged a lack of knowledge and skills to include people with intellectual and developmental disabilities, there was a strong interest in learning.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"3-15"},"PeriodicalIF":1.1,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145656771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding of Authorship Guidelines and the Frequency of Authorship Misuse: A Descriptive Cross-Sectional Study in the State of Qatar.","authors":"Seba Qussini, Samer Hammoudeh, Saad Shahbal, Rajvir Singh, Kris Dierickx","doi":"10.1177/15562646251395350","DOIUrl":"10.1177/15562646251395350","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"39-48"},"PeriodicalIF":1.1,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12913682/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145553189","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Authority and Authorship: Examining Leadership's Role in Medical Publications.","authors":"Vygintas Aliukonis, Eugenijus Gefenas","doi":"10.1177/15562646251392340","DOIUrl":"10.1177/15562646251392340","url":null,"abstract":"<p><p>BackgroundAcademic medicine often struggles to balance leadership duties with maintaining research productivity. The impact of holding a position of power on authorship practices in a hierarchical environment remains underexplored. We addressed this gap by examining how leadership roles influence publication and collaboration patterns in Lithuanian medical academia.MethodsWe performed a bibliometric analysis of ten-year publication records for 633 Lithuanian medical researchers in formal leadership positions (department heads, center directors, and similar formal roles), comparing their output and authorship patterns to those of peers without such roles. Publication data were collected from PubMed and a national academic library, capturing total publications, author order (first/middle/last author positions), and co-authorship counts. We used statistical tests to compare groups and applied the Gini coefficient to assess inequality in research output.ResultsLeaders showed distinct authorship roles and collaboration patterns. Compared to equally productive non-leaders, leaders had significantly fewer first-authored papers (10.79% vs 36.31%) and more last-authored (36.42% vs 23.57%) and middle-authored contributions (52.78% vs 40.12%). Leaders published more papers (average 78.42 vs 49.41), in Web of Science-indexed journals (average 49.44 vs 27.68), and had higher h-indices (19.66 vs 12.59) (all <i>p</i> < 0.001). They also more frequently co-authored in larger teams (>5 co-authors: 58.76% vs 51.79%, <i>p</i> < 0.001). Output inequality among leaders was high (Gini = 0.718). Gender trends differed: prolific leaders were mostly men, while prolific non-leaders were mostly women. Importantly, these authorship patterns remained consistent across leader subgroups with varying productivity levels.ConclusionsLeadership position significantly impacts authorship practices and research productivity in Lithuanian medical academia -leaders display different patterns of collaboration and authorship positions, along with considerable institutional and gender disparities. The results illustrate how hierarchical power dynamics shape academic publishing in Lithuanian medical institutions. This evaluation could lead to important changes for organizational development and policies that ensure authorship credit accurately reflects actual contributions to research. From a research ethics perspective, authorship involves both accountability and recognition. The leadership-related shifts we observe require ethical scrutiny; our bibliometric analysis reveals structural patterns but cannot determine whether specific papers meet ICMJE authorship criteria.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"49-59"},"PeriodicalIF":1.1,"publicationDate":"2026-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12913695/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145423828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"GLIDE Global Health Ethics Leadership Awards 2025.","authors":"Heidi Matisonn","doi":"10.1177/15562646251403408","DOIUrl":"https://doi.org/10.1177/15562646251403408","url":null,"abstract":"","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251403408"},"PeriodicalIF":1.1,"publicationDate":"2025-12-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145710707","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Navigating Ambiguity and Uncertainty in End-of-Life Care Research Practice.","authors":"Tom van Drimmelen, M Nienke Slagboom, Ria Reis, Lex M Bouter, Jenny T van der Steen","doi":"10.1177/15562646251377121","DOIUrl":"10.1177/15562646251377121","url":null,"abstract":"<p><p>Researchers frequently face conceptual, methodological, and ethical decisions - collectively known as researcher discretion - that can substantially influence research outcomes. Despite its importance, the nature of these discretionary moments and their triggers in everyday research practice remain underexplored. Based on an abductive thematic analysis of fieldnotes, documents, and interviews from twelve months of ethnographic fieldwork in two end-of-life care research groups between 2020 and 2022, we found that uncertainty and moral ambiguity prompted researchers to shift from intuitive to reflective decision-making, requiring discretion. While uncertainty could in principle be reduced by further inquiry, practical constraints often made this unworkable. Moral ambiguity stemmed from conflicting values that no additional information could resolve. These findings suggest that strict adherence to protocols or ethical frameworks may be insufficient to ensure responsible conduct of research, and should be complemented by building researchers' capacity to navigate discretion and both identify and responsibly exercise their researcher discretion.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"323-334"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12586724/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145133010","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Weighing Open Science Against Research Participation Burden in Informed Consent: A Randomized Pilot Study.","authors":"Renata Iskander, Patrick Kane, Madeleine Sharp, Jonathan Kimmelman","doi":"10.1177/15562646251384573","DOIUrl":"10.1177/15562646251384573","url":null,"abstract":"<p><p>Deciding to participate in clinical research requires patients to evaluate various trial characteristics. This survey study measured the influence of trial characteristics (visit volume and open data sharing) on willingness to participate in patients with Parkinson's disease. Patients were randomized to either evaluate two trials (joint condition) or a single trial (separate condition). For patients who evaluated both trials, willingness to participate was greater in the restricted science protocol with fewer visits (7.60 vs. 7.12; mean difference, -0.48; 95% CI, -0.83 to -0.14). Patients who evaluated both trials were less willing to participate in the study involving more visits than patients who only evaluated the study involving more visits (7.12 vs. 8.14; mean difference, 1.02; 95% CI, 0.30 to 1.74). Patients have difficulty evaluating information about open science and visit burden when information is presented separately. Although views toward open science were favorable, preferences for fewer visits dominated decisions.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"311-322"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12586728/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145260490","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Topography of Human Subjects Research Ethics in Uzbekistan: Analysis Using the Emanuel Benchmarks.","authors":"Dilfuza Aniyozova, Kerim Munir","doi":"10.1177/15562646251383010","DOIUrl":"10.1177/15562646251383010","url":null,"abstract":"<p><p>Emanuel et al. (2004) proposed eight ethical benchmarks to assess the ethical integrity of human participants' research in low- and middle-income countries: collaborative partnership, social value, scientific validity, fair participant selection, favorable risk-benefit ratio, independent review, informed consent, and respect for recruited participants and their communities. We conducted a retrospective, descriptive analysis of 67 doctoral research proposals submitted between 2016 and 2019 to the Tashkent Institute of Postgraduate Medical Education in Uzbekistan.ResultsWhile all protocols addressed social value (67/67) and most demonstrated scientific validity (53/67) and collaborative partnership (40/67), far fewer adequately addressed fair participant selection (12/67), favorable risk-benefit ratio (3/67), independent review (3/67), informed consent (4/67), or respect for communities (3/67).ConclusionThis is the first empirical study to apply the Emanuel framework to doctoral research in Uzbekistan. The findings underscore the need for more systematic integration of these benchmarks into national ethics oversight and academic review procedures.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"263-274"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13270283/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145240739","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Scoping Review of Empirical Research on Research Ethics Board Membership and Expertise.","authors":"Emma Tumilty, Jake Young, Richard James, Kimberley Serpico, Ann Johnson, Emily E Anderson","doi":"10.1177/15562646251376747","DOIUrl":"10.1177/15562646251376747","url":null,"abstract":"<p><p>REB membership and its local idioculture play a key role in the decisions made. Little evidence exists as to what composition of membership expertise and training creates the conditions for a board to be most effective. This scoping review of the empirical research on REB membership and expertise aims to outline what evidence has been gathered and what gaps exist. Our main research question was: What empirical research exists on how research ethics boards (REBs) identify and train members and ensure they have adequate expertise to review research protocols? We found a small and diverse body of literature from around the world. We summarized findings in four themes: scientific expertise, ethical, legal and regulatory training and expertise, diversity of identity and perspectives, and engagement with research participant perspectives. Studies reviewed identified issues for all aspects of membership expertise and training. Further work is needed to establish best practices.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"275-285"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12490803/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145208890","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Research Ethics Committee Perspectives on the Reuse of Genetic Data: Gatekeepers of Responsible Research.","authors":"Revana Siddappa Devarinti, Madiwalayya Shivakantayya Ganachari","doi":"10.1177/15562646251383104","DOIUrl":"10.1177/15562646251383104","url":null,"abstract":"<p><p>BackgroundGenetic research holds immense potential for advancing personalized medicine, understanding disease mechanisms, and developing targeted therapies with safe and effective outcomes. The re-use of data can accelerate scientific discovery, reduce redundancy, and enhance the value derived from research investments. However, the re-use of genetic data also raises significant ethical, legal, and social concerns. Understanding the perspectives of research ethics committee members involved in the review of clinical trial protocols is crucial for developing policies and practices that balance the benefits and risks to research participants.ObjectiveThe primary objective of the research was to explore the knowledge, attitude, and practices of research ethics committee members on genetics and its data for re-use.Design and MethodThis was a cross-sectional observation study to explore the perspectives of research ethics committee members [<i>n</i> = 50] on the reuse of genetic samples and their data for future research purposes.Setting and ParticipantsThe study was conducted in the Clinical Research Department, Karnataka, India. The research involved a diverse group of research ethics committee members, including chairpersons, Medical scientists, clinicians, legal experts, and laypersons. The present study assessed the knowledge, attitude, and practices of research ethics committee members based on their role in the Research Ethics Committee.ResultsThe present research KAP assessment revealed significant variability in awareness and understanding of genetic samples and their data reuse. Clinicians (90%) and medical scientists (100%) exhibited the highest levels of knowledge about the genetic data for re-use, while laypersons and legal experts reported lower levels, which might be due to their educational background (<i>p</i> < 0.001). Educational background strongly influenced perspectives, with MSc-PhD holders demonstrating higher knowledge levels. The diverse levels of knowledge and varying concerns among different roles within Research Ethics Committees reflect the complex nature of ethical and legal considerations in the re-use of genetic data.ConclusionThe present research underscores the need to integrate stakeholder insights into future policy development on genetic data re-use, like ICH-GCP guidelines for clinical trials. Doing so can strengthen ethical governance, ensure participant trust, and guide the responsible reuse of genetic data in research. There are no universally accepted guidelines beyond those by ICMR (2017) and WHO (2024).RegistrationClinical trial registry in India-CTRI/2011/11/032811 dated 23.11.21.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"303-310"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145260520","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethics Compliance in Sub-Saharan African Higher Education Research (ECiSHER) Involving Human Participants: A Systematic Review of a Decade of Literature.","authors":"Prosper Dzifa Dzamesi, Dickson Okoree Mireku, Brandford Bervell, Jonathan Afful","doi":"10.1177/15562646251383091","DOIUrl":"10.1177/15562646251383091","url":null,"abstract":"<p><p>This study systematically reviews literature on ethics compliance in human-participant research within Sub-Saharan African (SSA) higher education, guided by PRISMA and based on 58 studies. Over half of the studies (32; 55.2%) employed qualitative methods to explore ethics in human-participant research. Research output was lowest in 2017 (1 study; 1.7%) and peaked in 2024 (12; 20.7%). South Africa contributed the most studies (13; 22.4%), followed by Nigeria (9; 15.5%), while Benin, Botswana, Ghana, Mali, Rwanda, and Zimbabwe each produced one (1.7%). The dominant challenge identified was the inconsistent application of ethical guidelines (56; 96.5%). Strengthening institutional ethics policies was the most frequent recommendation (51; 94.4%), while digitalisation of ethics review processes emerged as a significant trend (43; 74.8%). Capacity building for research ethics committees (RECs) and institutional review boards (IRBs) was highlighted. Harmonising ethical standards and providing targeted training to strengthen ethics governance in SSA higher education research were recommended.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"286-302"},"PeriodicalIF":1.1,"publicationDate":"2025-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145208946","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}