Ethics & human research最新文献_第3页

Returning Clinically Relevant Research Results to Participants: Guidelines for Investigators and the IRB 将临床相关研究结果返还给参与者：研究者和 IRB 指南》。

Ethics & human research Pub Date : 2024-03-06 DOI: 10.1002/eahr.500204

Amy Waltz, Bethany Johnson, Peter H. Schwartz

引用次数: 0

Should Researchers Destroy Audio or Video Recordings? 研究人员是否应该销毁录音或录像？

Ethics & human research Pub Date : 2024-03-06 DOI: 10.1002/eahr.500205

David B. Resnik, Alison Antes, Jessica Mozersky

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Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis 在不符合土著数据主权的研究政策中引导大学开放：案例分析。

Ethics & human research Pub Date : 2024-03-06 DOI: 10.1002/eahr.500202

Molly Wick, Deanna Erickson, Joel Hoffman, Lucinda Johnson, Ted Angradi

{"title":"Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis","authors":"Molly Wick, Deanna Erickson, Joel Hoffman, Lucinda Johnson, Ted Angradi","doi":"10.1002/eahr.500202","DOIUrl":"10.1002/eahr.500202","url":null,"abstract":"<div>\u0000 \u0000 <p>Indigenous nations and communities in the United States have rights as sovereign governments to exercise control and ownership over all data and information generated by or from the tribes, tribal members, or tribal resources. Indigenous nations exercise these rights through data ownership policies established in response to unethical research practices in research involving Indigenous communities. Most universities in the U.S. have “openness in research” policies to ensure academic freedom to publish freely, exercised by retaining university control of data. Here, we describe our study of cultural ecosystem services in the St. Louis River estuary region (Nagaajiwanaang in the language Ojibwemowin) in Duluth, Minnesota, and Superior, Wisconsin, U.S., an area that includes portions of the 1854 and 1842 Ceded Territories and reservation lands of a local band of Ojibwe (hereafter referred to as “the Band”). In this university-led, Band-supported study, both the university and the Band sought ownership of data collected based on their respective policies, resulting in a research delay of nearly a year. We found that open research policies that do not consider Indigenous sovereignty can hamper collaboration between university researchers and tribal nations, even when there is broad agreement on research goals and objectives. University open research policies that do not explicitly address Indigenous sovereignty fall short of the open research principles they intend to support and should be revised. Formal adoption of principles for ethical research with sovereign tribal governments by universities is needed to improve coordination and trust among university and tribal researchers and members.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 2","pages":"2-15"},"PeriodicalIF":0.0,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.500202","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140040567","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

Rapid Review of Therapy Protocols for Public Health Emergencies 快速审查突发公共卫生事件的治疗方案。

Ethics & human research Pub Date : 2024-03-06 DOI: 10.1002/eahr.500203

Bruce G. Gordon, Abigail E. Lowe, Christopher J. Kratochvil

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Participant Misrepresentation in Online Focus Groups: Red Flags and Proactive Measures 在线焦点小组中的参与者失实陈述：红旗和积极措施

Ethics & human research Pub Date : 2024-01-19 DOI: 10.1002/eahr.500198

Lesley Andrew, Emily Gizzarelli, Mohamed Estai, Ruth Wallace

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Institutional Review Boards' Assessment of Local Context: A Mixed Methods Study 机构审查委员会对当地环境的评估：混合方法研究。

Ethics & human research Pub Date : 2024-01-19 DOI: 10.1002/eahr.500195

Timothy C. Guetterman, Adrianne Haggins, Sacha Montas, Joy Black, Deneil Harney, Michael D. Fetters, Robert Silbergleit, Neal W. Dickert

{"title":"Institutional Review Boards' Assessment of Local Context: A Mixed Methods Study","authors":"Timothy C. Guetterman, Adrianne Haggins, Sacha Montas, Joy Black, Deneil Harney, Michael D. Fetters, Robert Silbergleit, Neal W. Dickert","doi":"10.1002/eahr.500195","DOIUrl":"10.1002/eahr.500195","url":null,"abstract":"<div>\u0000 \u0000 <p>The nature of the review of local context by institutional review boards (IRBs) is vague. Requirements for single IRB review of multicenter trials create a need to better understand interpretation and implementation of local-context review and how to best implement such reviews centrally. We sought a pragmatic understanding of IRB local-context review by exploring stakeholders' attitudes and perceptions. Semistructured interviews with 26 IRB members and staff members, institutional officials, and investigators were integrated with 80 surveys of similar stakeholders and analyzed with qualitative theme-based text analysis and descriptive statistical analysis. Stakeholders described what they considered to be local context, the value of local-context review, and key processes used to implement review of local context in general and for emergency research conducted with an exception from informed consent. Concerns and potential advantages of centralized review of local context were expressed. Variability in perspectives suggests that local-context review is not a discrete process, which presents opportunities for defining pathways for single IRB review.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 1","pages":"2-13"},"PeriodicalIF":0.0,"publicationDate":"2024-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.500195","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492274","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

Positive and Negative Social Consequences of Participating in a Sexual-Network Study 参与性网络研究的积极和消极社会后果。

Ethics & human research Pub Date : 2024-01-19 DOI: 10.1002/eahr.500196

Morgan Spahnie, Amiah Matthews, Dale Kiss, JaNelle Ricks, William Miller, Abigail Norris Turner

{"title":"Positive and Negative Social Consequences of Participating in a Sexual-Network Study","authors":"Morgan Spahnie, Amiah Matthews, Dale Kiss, JaNelle Ricks, William Miller, Abigail Norris Turner","doi":"10.1002/eahr.500196","DOIUrl":"10.1002/eahr.500196","url":null,"abstract":"<div>\u0000 \u0000 <p>Assessment of risks and benefits of study participation is standard practice preceding the initiation of human subjects research. Although tracking adverse events during research participation is routine, collecting information from participants about what they perceive as benefits is less common. We longitudinally tracked social risks and benefits of participation among a cohort of 241 men who have sex with men participating in a sexual health study to improve participants' experiences and enhance understanding of participant motivations to enroll and attend follow-up. Of the participants who returned for at least one follow-up visit (n = 217, 90%), most (n = 185, 85%) reported positive consequences resulting from participation. Reporting of negative social consequences was rare, and all concerned a stigmatized reaction from someone learning about the participant's involvement in a sexual health study. Better identification of both positive and negative consequences resulting from research participation may improve how researchers design, recruit, and conduct research.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 1","pages":"14-25"},"PeriodicalIF":0.0,"publicationDate":"2024-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.500196","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492287","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

The Ethics of Using News Stories concerning Minors as Empirical Material in Health Research: Reflections on a Swedish Case 在健康研究中使用有关未成年人的新闻报道作为经验材料的伦理问题：瑞典案例反思

Ethics & human research Pub Date : 2024-01-19 DOI: 10.1002/eahr.500197

Sigrid Stjernswärd, Carola Tilgmann, Stinne Glasdam

引用次数: 0

Moving to the Middle Ground: Redefining Genomic Utility to Expand Understanding of Familial Benefit 走向中间地带：重新定义基因组效用，扩大对家族利益的理解。

Ethics & human research Pub Date : 2024-01-19 DOI: 10.1002/eahr.500199

Kyle B. Brothers, Greg M. Cooper, Katelyn C. McNamara, Amy A. Lemke, Josie Timmons, Carla A. Rich, R. Jean Cadigan, Roselle S. Ponsaran, Aaron J. Goldenberg

引用次数: 0

Navigating Informed Consent Requirements and Expectations in Cluster Randomized Trials: Research Ethics Board Members’ and Researchers’ Views 在集群随机试验中导航知情同意要求和期望:研究伦理委员会成员和研究人员的观点。

Ethics & human research Pub Date : 2023-11-21 DOI: 10.1002/eahr.500189

Anita Ho, Soodabeh Joolaee, Michael McDonald, Don Grant, Michel M. White, Holly Longstaff, Eirikur Palsson

{"title":"Navigating Informed Consent Requirements and Expectations in Cluster Randomized Trials: Research Ethics Board Members’ and Researchers’ Views","authors":"Anita Ho, Soodabeh Joolaee, Michael McDonald, Don Grant, Michel M. White, Holly Longstaff, Eirikur Palsson","doi":"10.1002/eahr.500189","DOIUrl":"10.1002/eahr.500189","url":null,"abstract":"<div>\u0000 \u0000 <p>Informed consent is a cornerstone of ethical human research. However, as cluster randomized trials (CRTs) are increasingly popular to evaluate health service interventions, especially as health systems aspire toward the learning health system, questions abound how research teams and research ethics boards (REBs) should navigate intertwining consent and data-use considerations. Methodological and ethical questions include who constitute the participants, whose and what types of consent are necessary, and how data from people who have not consented to participation should be managed to optimize the balance of trust in the research enterprise, respect for persons, the promotion of data integrity, and the pursuit of the public good in the research arena. In this paper, we report the findings and lessons learned from a qualitative study examining how researchers and REB members consider the ethical dimensions of when data can be collected and used in CRTs in the evolving research landscape.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"45 6","pages":"31-45"},"PeriodicalIF":0.0,"publicationDate":"2023-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.500189","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138291967","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