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

{"title":"Ethical Practices for Gaining Access for Research with Deaf Communities in South Africa: A Case of South African Sign Language.","authors":"Patrick Sibanda, Chrismi-Rinda Loth, Sara Siyavoshi","doi":"10.1177/15562646251353471","DOIUrl":"https://doi.org/10.1177/15562646251353471","url":null,"abstract":"<p><p>Research ethics frameworks used in South Africa view Deafness from a biomedical perspective. Unfortunately, this could hinder research access to Deaf communities. Deaf-centric best practices draw from sociocultural perspectives instead. Motivated by this lack of Deaf-centric provisions for research with Deaf communities in the existing legal ethical frameworks in South Africa, this article examines best practices for gaining access to Deaf communities based on a broader study on South African Sign Language place names. The article synthesises ethical guidelines from literature and infuses them with the researchers' own experiences during fieldwork of the broader study to come up with best practices. These include community engagement and collaborative partnerships, seeking ethics clearance; respecting conventions of the Deaf culture, and strategically managing discontent. We conclude that these best practices could form a foundation for a future research ethics framework that considers Deaf-centric practices.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251353471"},"PeriodicalIF":0.0,"publicationDate":"2025-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144577586","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":"Research Ethics Education Program in Jordan: Achievements and Challenges.","authors":"Wael K Al-Delaimy, Karem Alzoubi, Omar Khabour, Sanaa Jaber","doi":"10.1177/15562646251331757","DOIUrl":"https://doi.org/10.1177/15562646251331757","url":null,"abstract":"<p><p>The Fogarty-NIH-funded Research Ethics Education Program in the Middle East and North Africa (MENA) region was launched in Jordan in 2015 in collaboration between the University of California-San Diego Jordan University of Science and Technology (JUST). In the program's first phase, 118 researchers from 13 countries were trained in empirical research methods and research ethics and awarded a one-year fellowship in Responsible Conduct of Research. In the program's second phase, which started in 2022, the first regional master's in bioethics enrolled 35 students with the aim of reaching 40 students. The program has also created self-learning training modules in the Arabic language for students and researchers. Over 2,000 training completion certificates have been issued through these modules. The program also organized nine conferences on research ethics in Jordan and the region. In conclusion, we believe that this education program significantly impacted the MENA region's individual and institutional capacity for research ethics education.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251331757"},"PeriodicalIF":0.0,"publicationDate":"2025-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144577587","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":"Content and Readability of Informed Consent Documents Approved by Research Ethics Committees of Health Institutions in South-East Nigeria.","authors":"Onyinye Chime, Emmanuel Ezeome","doi":"10.1177/15562646251350200","DOIUrl":"10.1177/15562646251350200","url":null,"abstract":"<p><p>Variability and inadequacies in the contents of informed consent documents (ICDs) affect the quality of the informed consent (IC) process. This study assessed the content and readability of the 241 ICDs approved for biomedical research in South-East Nigeria from 2019 to 2021. The presence of basic elements for IC in the revised Common Rule and National Code was assessed, and the Flesh readability scores measured. Only 2 (0.8%) of the ICDs had all basic elements required by the Common Rule. Most ICDs fall below recommended readability indices. To improve the quality of the IC process, HRECs are to ensure that, while upholding research validity and credibility, ICDs are easy-to-read yet contain the basic information needed for decision-making by participants.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"97-106"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144304403","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":"Privacy, Policy, and Profits: Survey of Patient Preferences for Research on De-Identified Biosamples.","authors":"Amelia J Hood, Mario Macis, Diana Mendoza Cervantes, Todd Bear, Jeffrey Kahn, Jennifer Xavier, Adrian Lee, Ananya Dewan, Marielle S Gross","doi":"10.1177/15562646251346940","DOIUrl":"10.1177/15562646251346940","url":null,"abstract":"<p><p>This study aims to identify patient preferences to inform ethical frameworks, policies, and technologies for advancing biobanking and precision medicine while balancing competing objectives and priorities. We surveyed 109 American breast cancer patients in 2022 about conditions for receiving research results, how their biospecimens are used, partnerships between nonprofit health systems and for-profit companies, and the distribution of financial returns from research. Survey questions explored the balance between objectives like maintaining de-identification versus receiving research results and other benefits. Patients in our sample generally prefer to be re-identified to receive information about the use of their donated tissue-especially research results. They support public-private partnerships if they speed up new therapies and favor the idea of sharing in financial returns generated from research on their tissue. These insights can inform the development of frameworks and technologies that position patients as key stakeholders in biobanking research.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"149-161"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144278054","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":"ChatGPT in Academic Writing: A Scientometric Analysis of Literature Published Between 2022 and 2023.","authors":"Gergely Ferenc Lendvai","doi":"10.1177/15562646251350203","DOIUrl":"10.1177/15562646251350203","url":null,"abstract":"<p><p>This paper reviews the disruptive role of ChatGPT in academic writing, focusing on its implications for scholarly practices and emerging ethical challenges. Using document co-citation analysis (DCA), it maps the thematic and intellectual structure of the discourse on ChatGPT in academic knowledge production. Drawing on a dataset of 171 peer-reviewed articles from Scopus, the analysis, conducted using CiteSpace, identified 10 major thematic clusters, including ethical risks, practical applications, and pedagogical innovations. The resulting high-modularity network (<i>Q</i> = 0.8989, <i>S</i> = 0.9466), comprising 866 nodes and 2,274 edges, ensured methodological rigor and thematic clarity. The findings reveal widespread recognition of ChatGPT's value in enhancing writing and supporting innovative educational frameworks, especially for non-native speakers. Concerns persist regarding hallucinated references, plagiarism, authorship ethics, and the reliability of AI-detection tools. Our paper accentuates the need for proactive oversight and policy development to ensure responsible integration of generative AI in research and education.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"131-148"},"PeriodicalIF":0.0,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12231813/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144370065","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":"Health Research Ethics in Southern Africa: Building Capacity and Cultivating Excellence.","authors":"Zaynab Essack, Paul Ndebele, Heidi Matisonn, Jantina de Vries, Keymanthri Moodley, Stuart Rennie, Joseph Ali, Nancy Kass, Carel IJsselmuiden, Nhlanhla Mkhize, Mariana Kruger, Ann Strode, Warren Freedman, Douglas Wassenaar","doi":"10.1177/15562646251347549","DOIUrl":"https://doi.org/10.1177/15562646251347549","url":null,"abstract":"<p><p>The health research landscape in southern Africa is becoming increasingly complex as research efforts intensify to address the region's significant disease burden. The increasing volume and complexity of health research in low- and middle-income countries (LMICs) highlights the ongoing need for enhanced research ethics capacity. To supplement a review published in 2014, this paper provides an overview of research ethics capacity-building initiatives supported through substantive long-term competitive awards from the Fogarty International Center of the US National Institutes of Health between 2014 and 2024. These programs aimed to enhance the capabilities of research ethics committees (RECs) and strengthen research ethics capacity throughout Southern Africa, with broader benefits to the African continent and globally as collaborative health research increases. The programs have successfully developed and delivered comprehensive research ethics curricula tailored to research ethics concerns in the region. Trainees and graduates include clinicians, researchers, REC members, REC administrators, lawyers, and ethicists, with focused efforts to ensure gender parity. This increased representivity of scholars has improved the membership on RECs and in skilled research ethics leadership in the region. For the benefit of future planning, this paper also describes some of the many challenges faced in delivering on program goals - including COVID-19. We also describe innovative solutions developed to address these challenges and meet the needs of students, faculty and institutions, while cultivating excellence in health research ethics. The paper concludes by highlighting areas for future research, underscoring the importance of continued diverse global investment in research ethics capacity to protect research participants and maintain and improve ethical standards and practice in health research within the region and globally. This will enable the development of innovative evidence-based global health solutions based on ethical research.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251347549"},"PeriodicalIF":0.0,"publicationDate":"2025-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144532827","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":"Strengthening Research Ethics Capacity in West Africa, 2015-2024.","authors":"Kyle Ferguson, Clement Adebamowo, Adebayo O Adejumo, Temidayo Ogundiran, Muktar H Aliyu, Elisa J Gordon, Zubairu Iliyasu, Christopher Agulanna, Shehu U Adamu, Olusegun Adeyemo, Euzebus C Ezugwu, Samuel A Adeyemo, Arthur L Caplan, Olugbenga Ogedegbe, Troy D Moon, Elizabeth Heitman, Jonathan C Taylor, Imran Bari, Adnan A Hyder, Paul Ndebele, Seydou Doumbia, Veronica P S Njie-Carr, Jainaba Sey-Sawo, Henry Silverman, Effua Usuf, Thomas Senghore, Isabel Inês Monteiro de Pina Araújo, Amos K Laar, Emmanuel R Ezeome","doi":"10.1177/15562646251335076","DOIUrl":"https://doi.org/10.1177/15562646251335076","url":null,"abstract":"<p><p>This article reviews the development and evolution of Fogarty International Center-funded research ethics training programs in West Africa over the past decade. In response to local and global challenges in bioethics and biomedical research, these programs are fostering ethical awareness, shaping local and national ethics review systems, and enhancing bioethics capacity in the region. These efforts have expanded alongside increased democratic governance, technological advances, and significant increases in global research funding and international research collaborations, particularly related to HIV/AIDS and malaria. We believe that the West Africa Bioethics (WAB) Training Program in Nigeria played a central role in this growth, serving as a model for subsequent programs in Ghana, Mali, and The Gambia. This paper describes the nature, successes, and challenges of these programs. It also outlines an agenda and strategies for future work to enhance research ethics and bioethics capacities in the region, both in terms of education and governance.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251335076"},"PeriodicalIF":0.0,"publicationDate":"2025-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144532828","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":"Advancing Doctoral and Postdoctoral International Bioethics Training Programs Supported by the D43 National Institutes of Health (NIH) Fogarty Mechanism.","authors":"Connie M Ulrich, Joseph Ali, Emily E Anderson, Carel IJsselmuiden, Nancy Kass, Kerim Munir, Mariana Kruger, Nhlanhla Mkhize, Keymanthri Moodley, Stuart Rennie, Nelson K Sewankambo, Bruno Sunguya, David Urassa, Douglas Wassenaar","doi":"10.1177/15562646251342882","DOIUrl":"https://doi.org/10.1177/15562646251342882","url":null,"abstract":"<p><p>Advancing doctoral and postdoctoral international bioethics training in low-and-middle income countries (LMICs) is essential to address the emerging and reemerging healthcare needs of local populations. The COVID-19 pandemic underscored the need for sustenance of global collaboration and rapid adaptability in the future to further prioritize research frameworks to benefit LMICs. Thus, the purpose of the manuscript is to share the successes, challenges, and future considerations of building bioethics research capacity in seven federally funded training programs supported by the Fogarty International Center of the National Institutes of Health D43 mechanism. We advocate for continued investment in training programs recognizing that it requires committed time and effort, specialized funding opportunities, cultural sensitivity, and interdisciplinary faculty support both domestically and internationally. This investment supports cross-disciplinary collaboration, enhances the ethical conduct of research and recognizes the importance of context-sensitive research that generates evidence-based data for global solutions.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"15562646251342882"},"PeriodicalIF":0.0,"publicationDate":"2025-06-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144500291","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":"A Critical Assessment of the Quality of Reporting of Ethical Protections in Medical Papers Published in Turkey.","authors":"M Kemal Temel","doi":"10.1177/15562646221108600","DOIUrl":"https://doi.org/10.1177/15562646221108600","url":null,"abstract":"<p><p>The Declaration of Helsinki (DoH), the International Committee of Medical Journal Editors (ICMJE) recommendations, and the Committee on Publication Ethics (COPE) guidelines outline the basic principles for ethical conduct and publication of human-subject research, most notably informed consent (IC) and research ethics committee (REC) approval. This retrospective observational study was a first study to investigate the quality of reporting of these protections in a selected sample of medical papers published in Turkey. A total of 573 research articles published in the official journals of six leading Turkish medical schools between January 2018 and December 2020 were searched for information on obtaining (i) REC approval, (ii) written IC from research subjects or their legal guardians/representatives, and (iii) an REC-granted IC waiver when it was found, as stated in the DoH, \"impossible or impracticable to obtain consent\" from research subjects. Similarly, a total of 166 case reports were searched for a statement about publication-specific IC, as was recommended by COPE. Despite a statistically significant improvement over the years, the overall rates were found to be unsatisfactory. The protections were particularly misused or underused in retrospective research, where the rates of reporting written IC (15.41% vs. 48.61%) and REC approval with date and reference number information (45.38% vs. 61.11%) were significantly lower than in prospective research (<i>p</i> < .05). Both the practices of seeking and granting an IC waiver when no IC was obtained were extremely rare (n = 3). It was also found that the requirement of structured ethical information in research papers was associated with higher levels of ethics compliance, and that medical publishing in Turkey needed specific improvements, including better implementation of the protections already adopted in principle, clearer instructions for authors, more rigorous editorial scrutiny, and greater commitment to rejecting substandard submissions.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"504-514"},"PeriodicalIF":1.3,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40192336","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":"The Profile of Articles on <i>AXIN2</i> Mutations, Oligodontia, and Ethical Statements in Dental Research.","authors":"R Constance Wiener","doi":"10.1177/15562646221116801","DOIUrl":"https://doi.org/10.1177/15562646221116801","url":null,"abstract":"<p><strong>Purpose: </strong>Editors often require ethical statements in research publications. This is particularly important with genetic data where discrimination may occur upon data disclosures. The purpose of this research is to determine if there was a positive trend of publishing ethical statements in dental genetic research. The study is limited to AXIN2 mutations which may be associated with oligodontia and cancer.</p><p><strong>Methods: </strong>A MEDLINE search of 2011-2021 articles concerning AXIN2, oligodontia, and ethical statements was conducted. Reviews, nonhuman subject research, abstracts, and articles not written nor translated into English were excluded.</p><p><strong>Results: </strong>Forty-four studies were found; 10 excluded. There were 25 (75.8%) with ethical statements, and 25 (75.8%) with participant consent statements. There was no significant difference by year in ethical statements over the ten years (p = 0.094).</p><p><strong>Conclusion: </strong>There is a need to encourage more ethical statements in publications especially for genetically sensitive topics to reassure readers of ethical practices.</p>","PeriodicalId":520668,"journal":{"name":"Journal of empirical research on human research ethics : JERHRE","volume":" ","pages":"412-425"},"PeriodicalIF":1.3,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9502021/pdf/nihms-1823929.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40623441","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}