Ethics & human research最新文献

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}

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In Memoriam 为纪念

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

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Our Theater of Anonymity 我们的无名剧场

Ethics & human research Pub Date : 2025-07-14 DOI: 10.1002/eahr.60027

Sara Meeder, Megan Doerr

{"title":"Our Theater of Anonymity","authors":"Sara Meeder, Megan Doerr","doi":"10.1002/eahr.60027","DOIUrl":"https://doi.org/10.1002/eahr.60027","url":null,"abstract":"<div>\u0000 \u0000 <p>Ethics review boards are increasingly asked to review big health data research proposals using a regulatory framework written prior to the current era of machine learning and artificial intelligence. Traditional consideration of individual identifiability does not account for the growing recognition that almost all data can be reidentified. This leaves the research ethics community performing a “theater of anonymity”: weighing benefit versus risk on the inclusion of participant identifiers alone. The wider research community, including U.S. federal agencies, is pushing for greater transparency and data sharing, stretching the current definition of identifiability to the breaking point. Additionally, shifting attitudes on the balance between privacy and research benefit may make a project more acceptable to individuals and communities than to the ethics boards designed to serve them. Reviewing the human research community's historical and current understanding of identity in terms of research, risk, benefit, and consent may point toward a need for a change in how consent is conceived. Particularly in the context of consent for big health data research, the research ethics community may need to shift its focus from solely considering individuals toward actively considering the interests of the communities most likely to be affected by the research.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 4","pages":"37-42"},"PeriodicalIF":0.0,"publicationDate":"2025-07-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.60027","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144624303","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

Equitable Data Sharing in Collaborative Health Research in Sub-Saharan Africa: A Translational Bioethics Perspective 撒哈拉以南非洲合作卫生研究中的公平数据共享：转化生物伦理学视角

Ethics & human research Pub Date : 2025-05-06 DOI: 10.1002/eahr.60023

Pamela Andanda, Johannes Machinya, Takudzwa Mutomba

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What's in a Lie? How Researchers Judge the Justifiability of Deception 谎言里有什么？研究人员如何判断欺骗的正当性

Ethics & human research Pub Date : 2025-05-06 DOI: 10.1002/eahr.60003

Kamiel Verbeke, Tomasz Krawczyk, Dieter Baeyens, Jan Piasecki, Pascal Borry

{"title":"What's in a Lie? How Researchers Judge the Justifiability of Deception","authors":"Kamiel Verbeke, Tomasz Krawczyk, Dieter Baeyens, Jan Piasecki, Pascal Borry","doi":"10.1002/eahr.60003","DOIUrl":"https://doi.org/10.1002/eahr.60003","url":null,"abstract":"<div>\u0000 \u0000 <p>Research ethics guidance on deception does not seem to provide extensive support to researchers and ethics reviewers on how to assess the justifiability of specific deceptive studies. One potential explanation for this shortcoming is that guidance does not offer precise and coherent descriptions of the ethically relevant characteristics of deceptive studies. To facilitate the development of improved guidance, we report on the findings of interviews with a diverse group of 24 researchers who use deception. Interviewees discussed how the interests of participants, society, and researchers can be affected by characteristics of the deceptive methods used. These characteristics pertained to the deceptive act (i.e., false, truthlike, or vague information; standardized or flexible deception), participants’ belief formation (i.e., credibility and suspicions), and deception-induced behaviors and experiences (i.e., consent validity, negative value, and duration of induced study behaviors and experiences). In addition, researchers described as ethically relevant the characteristics of the social context in which deceptive studies were embedded. These characteristics related to the deceiver-participant relationship and the participants’ community. Overall, our study contributes to a more coherent and precise, as well as complex and nuanced, understanding of the study characteristics that affect the justifiability of deception.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"47 3","pages":"13-29"},"PeriodicalIF":0.0,"publicationDate":"2025-05-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143914204","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

Incorporating Gender-Neutral Language in IRB Materials: Perceptions of IRB Professionals 在IRB材料中加入中性语言：IRB专业人员的看法

Ethics & human research Pub Date : 2025-05-06 DOI: 10.1002/eahr.60022

Kevin L. Nellis, Ronnie Lichtman, Jeffrey Birnbaum, Stanley Friedman, Elise Zwicklbauer

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Undue Inducement and Disparate Impact: A Collectivist Account 不适当的诱导和不同的影响：一个集体主义的解释

Ethics & human research Pub Date : 2025-05-06 DOI: 10.1002/eahr.60002

Christopher Bobier

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