Ethics & human research最新文献

Research Participant Bill of Rights: Clarifying the Role of Research Physicians 研究参与者权利法案：明确研究医生的角色

Ethics & human research Pub Date : 2025-09-27 DOI: 10.1002/eahr.60035

Mark A. Rothstein

引用次数: 0

Broadening Core Research Ethics Principles: Insights from Research Conducted with Black Communities 拓宽核心研究伦理原则：来自黑人社区研究的见解

Ethics & human research Pub Date : 2025-09-27 DOI: 10.1002/eahr.60011

Johanne Jean-Pierre, Tya Collins, Khandys Agnant, Alicia Boatswain-Kyte, Cameron Herman, Tanya Mathews, Bukola Salami, Carl E. James

{"title":"Broadening Core Research Ethics Principles: Insights from Research Conducted with Black Communities","authors":"Johanne Jean-Pierre, Tya Collins, Khandys Agnant, Alicia Boatswain-Kyte, Cameron Herman, Tanya Mathews, Bukola Salami, Carl E. James","doi":"10.1002/eahr.60011","DOIUrl":"https://doi.org/10.1002/eahr.60011","url":null,"abstract":"<p>Drawing from a 2023 symposium panel that focused on conducting health equity research with Black communities, we propose to expand our interpretation of core research ethics principles. In light of a surge of research conducted in Black diasporic communities since the 2020 killing of George Floyd, the symposium sought to enhance the quality and impact of research involving Black Canadians. We contend that by broadening the interpretation and application of respect for persons, beneficence, and justice, researchers will conduct impactful and transformative research projects that foster health equity. We emphasize the importance of not limiting the core principle of respect for persons to individual participants but to extend it to communities throughout the research process. Furthermore, we suggest that researchers can deepen their commitment to the core principle of beneficence or concern for welfare and design relevant and empowering research projects through meaningful community involvement. We highlight that to further the implementation of the core principle of justice, scholars should adopt a human development approach and mobilize innovative outreach recruitment strategies to ensure that Black communities have the opportunity to participate in biomedical and public health research while also benefiting from the knowledge produced.</p>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 5","pages":"2-12"},"PeriodicalIF":0.0,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60011","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145172057","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}

引用次数: 0

Natural Language Processing in Clinical Research Recruitment: A Scoping Review Enriched with Stakeholder Insights 临床研究招募中的自然语言处理：丰富了利益相关者见解的范围审查

Ethics & human research Pub Date : 2025-09-27 DOI: 10.1002/eahr.60014

Lara Bernasconi, Georg Avakyan, Frédérique Hovaguimian, Regina Grossmann

{"title":"Natural Language Processing in Clinical Research Recruitment: A Scoping Review Enriched with Stakeholder Insights","authors":"Lara Bernasconi, Georg Avakyan, Frédérique Hovaguimian, Regina Grossmann","doi":"10.1002/eahr.60014","DOIUrl":"https://doi.org/10.1002/eahr.60014","url":null,"abstract":"<p>We conducted a scoping review to characterize natural language processing (NLP) applications in clinical trials recruitment and conducted semistructured interviews to obtain stakeholders’ perspectives on these technologies, with a focus on ethical considerations. The scoping review focused on English-language original articles published from January 2021 to June 2024, sourced from Ovid Medline. Data extracted included the characteristics of NLP systems, their evaluations, and ethical considerations regarding patient autonomy and equity. Additionally, semistructured interviews with experts from various specialties were conducted, and the data were analyzed using thematic analysis. Most of the 47 eligible articles focused on NLP models for electronic health records screening. The literature predominantly emphasized the models’ accuracy and efficiency, while ethical considerations received little attention. Interview findings underscored the need for more ethical reflection and real-world implementation analysis, revealing differing opinions on anonymization, consent, and the impact of NLP tools on fair opportunities. NLP applications for participant recruitment in clinical research are in early stages, with a gap between ethical discourse and reporting in current literature. Practical guidelines are needed for implementing and reporting ethical aspects throughout the lifecycle of NLP applications, along with empirical research to assess their ethical impact.</p>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 5","pages":"13-23"},"PeriodicalIF":0.0,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60014","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145172059","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}

引用次数: 0

New Legal Measures Restricting Gender-Affirming Care: Implications for Research Ethics 限制性别肯定护理的新法律措施：对研究伦理的影响

Ethics & human research Pub Date : 2025-09-27 DOI: 10.1002/eahr.60018

Robert Klitzman

{"title":"New Legal Measures Restricting Gender-Affirming Care: Implications for Research Ethics","authors":"Robert Klitzman","doi":"10.1002/eahr.60018","DOIUrl":"https://doi.org/10.1002/eahr.60018","url":null,"abstract":"<div>\u0000 \u0000 <p>Increasingly, new legal measures are restricting the use of gender-affirming care, raising challenges not only for the medical care of transgender/gender-nonbinary individuals, but also for medical research and research ethics. These restrictions may discourage researchers from conducting various types of research with transgender/gender-nonbinary individuals, such as asking about sexual behavior and gender identity or related issues in studies of adolescents and young adults more broadly. Researchers and institutions may also face professional risks in pursuing such research. Thus, restrictions on the use of gender-affirming care have important implications for researchers, institutional review boards (IRBs), institutional officials, policy-makers, and others. Restrictions could have an impact on the design, implementation, and management of research studies, potentially requiring consent form modifications, reconsent of participants, and asking participants about possible resulting physical/legal/social problems. Researchers and IRBs need to carefully assess these shifting legal restrictions. Input from legal experts may be needed concerning the interpretation, implementation, and enforcement of local and federal legal measures for initial and continuing IRB review of research protocols and the assessment of any changes to relevant legal measures. Researchers, IRBs, and others thus need to recognize, address, and develop “best practices” regarding these new restrictions.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 5","pages":"24-28"},"PeriodicalIF":0.0,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145172058","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}

引用次数: 0

Translational Genomics and Community-Driven Research in Australia 澳大利亚的转化基因组学和社区驱动研究

Ethics & human research Pub Date : 2025-09-27 DOI: 10.1002/eahr.60031

Fiona Russo, Keri Finlay, Isabella Sherburn, Tiffany Boughtwood, Jane Tiller

{"title":"Translational Genomics and Community-Driven Research in Australia","authors":"Fiona Russo, Keri Finlay, Isabella Sherburn, Tiffany Boughtwood, Jane Tiller","doi":"10.1002/eahr.60031","DOIUrl":"https://doi.org/10.1002/eahr.60031","url":null,"abstract":"<p>The need for community involvement in human translational research has gained international recognition, with a growing consensus on its critical role in ensuring ethical and impactful health outcomes. In Australia, several bodies are beginning to mandate community involvement in research, reflecting this global trend. However, there remains a notable gap in practical guidance on effectively engaging communities, particularly in the emerging field of genomic research. To address this, Australian Genomics, a national collaboration supporting the translation of genomic research into clinical practice, coordinated an initiative called Involve Australia (IA). IA has developed comprehensive guidelines, together with and informed by the needs and perspectives of those directly impacted by genomic research, through surveys, interviews, and public consultations. The IA Guidelines provide practical information for genomic researchers on involving community members effectively and meaningfully in projects to ensure effective research translation, emphasizing the importance of building relationships, setting clear expectations, valuing community contributions, evaluating and reporting on the community involvement process, and translation of research outcomes. The IA Guidelines have been endorsed by various research and patient organizations, demonstrating the growing support for resources in this area. The development and implementation of these guidelines represent a crucial step forward in promoting community involvement in genomic research, setting a precedent for other areas of health and medical research to follow.</p>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 5","pages":"37-43"},"PeriodicalIF":0.0,"publicationDate":"2025-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60031","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145172061","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}

引用次数: 0

Reconsidering Open-Ended Consent for Biospecimen and Health Record Research in the United States and Europe 重新考虑美国和欧洲生物标本和健康记录研究的开放式同意

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60028

Mark A. Rothstein, Prabha Rajasekaran, Edward S. Dove

引用次数: 0

Acceptability and Feasibility of Using Educational Incentives for Research Participation to Advance Antiracism 利用教育激励参与研究促进反种族主义的可接受性和可行性

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60010

Barbara Green-Ajufo, Deepalika Chakravarty, Andres Maiorana, Marguerita Lightfoot, John Hamiga, Greg Rebchook

{"title":"Acceptability and Feasibility of Using Educational Incentives for Research Participation to Advance Antiracism","authors":"Barbara Green-Ajufo, Deepalika Chakravarty, Andres Maiorana, Marguerita Lightfoot, John Hamiga, Greg Rebchook","doi":"10.1002/eahr.60010","DOIUrl":"https://doi.org/10.1002/eahr.60010","url":null,"abstract":"<div>\u0000 \u0000 <p>Nominal cash and gift card incentives provided to research participants have immediate financial benefits but make no lasting improvements to participants’ lives or social inequities they might experience. Our study examined the acceptability of offering a nonmonetary educational incentive as an added option to research participants as a potential to advance antiracism and address social inequities. Community members (n = 128) completed a quantitative survey; nine of whom also participated in a qualitative interview. Focus group discussions occurred with 11 researchers. Survey data were analyzed to obtain descriptive statistics. Qualitative data were analyzed using an iterative process guided by template analysis. Survey participants’ mean age was 45 years; 39% were white and 30% were Hispanic/Latinx; 80% were male; 39% had completed some college; 45% had a degree; and 71% reported previous paid participation in a research or community program. Of this group, 80% preferred cash or gift card incentives; 16% preferred an educational incentive; and 88% were likely to extremely likely to use educational incentives. Qualitative data indicated that educational incentives were acceptable but should not replace cash incentives; successful implementation would require organizational support. Noncash educational incentives may be acceptable to research participants and researchers and would help address social inequities. Successful implementation would require further research.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 4","pages":"18-28"},"PeriodicalIF":0.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60010","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144624301","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}

引用次数: 0

Engaging Sub-Saharan African Migrants in Social and Health Studies in Australia: Research and Ethical Challenges 参与撒哈拉以南非洲移民在澳大利亚的社会和健康研究：研究和伦理挑战

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60019

Andre M. N. Renzaho, Michael Polonsky, Julie Green

{"title":"Engaging Sub-Saharan African Migrants in Social and Health Studies in Australia: Research and Ethical Challenges","authors":"Andre M. N. Renzaho, Michael Polonsky, Julie Green","doi":"10.1002/eahr.60019","DOIUrl":"https://doi.org/10.1002/eahr.60019","url":null,"abstract":"<div>\u0000 \u0000 <p>The study summarizes and discusses challenges in engaging Sub-Saharan African migrants in Australia in social and health studies using data from 15 discrete projects co-led by the three researchers who authored this article. The projects included cross-sections of the African community, focusing on parents and their children, and were carried out over 11 years (2007 to 2018) in Australia. An African Review Panel (ARP), a community-owned steering committee whose members were drawn from the target communities, oversaw the implementation of these projects. Directed content analysis of textual data, drawing on reflective practice through ARP interactive reflective meeting sessions and bilingual workers’ reflective field notes, was undertaken. Findings and associated learnings were summarized into broad themes around lessons learned from participatory research and ethical challenges. Current guiding ethical principles in research may not cater to all cultures, and there is a need to develop ethical guidelines that are culturally responsive to account for collectivist values related to cultural expression and experiences.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 4","pages":"2-17"},"PeriodicalIF":0.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60019","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144624357","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}

引用次数: 0

Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science 在开放科学时代，重新审视与研究参与者分享总体结果的义务

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60009

Katherine E. MacDuffie, Benjamin S. Wilfond, Stephanie A. Kraft

{"title":"Revisiting the Obligation to Share Aggregate Results with Research Participants in the Era of Open Science","authors":"Katherine E. MacDuffie, Benjamin S. Wilfond, Stephanie A. Kraft","doi":"10.1002/eahr.60009","DOIUrl":"https://doi.org/10.1002/eahr.60009","url":null,"abstract":"<div>\u0000 \u0000 <p>Open science initiatives, intended to democratize access to research products, have made steady progress in shifting the global science culture toward practices like preregistration and data sharing. However, current open science efforts have not yet addressed the special obligation to ensure that research results are made accessible to the portion of the general population who contribute most directly to scientific advances: research participants. In this article, we explore the ethical obligation to communicate aggregate results to research participants and consider elements of open science infrastructure that could be amended for this purpose. We consider open questions for implementation related to the methods, timing, potential harms, oversight, and incentives for communicating aggregate results and pose solutions that could, following the example of open science initiatives, succeed in nudging investigators to reciprocate the efforts of research participants by sharing the scientific findings they helped to advance.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 4","pages":"29-36"},"PeriodicalIF":0.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60009","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144624302","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}

引用次数: 0

In Memoriam 为纪念

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60034

引用次数: 0