Ethics & human research最新文献

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Translational Bioethical Decision-Making: Human Brain Organoids as a Case Study 转化生物伦理决策:人脑器官模型案例研究》。
Ethics & human research Pub Date : 2024-06-30 DOI: 10.1002/eahr.500218
John H. Evans
{"title":"Translational Bioethical Decision-Making: Human Brain Organoids as a Case Study","authors":"John H. Evans","doi":"10.1002/eahr.500218","DOIUrl":"10.1002/eahr.500218","url":null,"abstract":"<div>\u0000 \u0000 <p>In an earlier essay, I advocated that translational bioethics uses the public's values, determined through social science, in its analysis of translational science technologies. It may be unclear what those values might be, and whether such a translational ethics would necessarily conclude that cutting edge technologies should not be developed. In this essay, I show the public's values relevant to human brain organoids and argue that a translational bioethics analysis using these values would support continued organoid research.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 4","pages":"47-51"},"PeriodicalIF":0.0,"publicationDate":"2024-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141471299","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
What Is “Key Information”? Consideration of the Reasons People Do or Do Not Take Part in Research 什么是 "关键信息"?考虑人们参与或不参与研究的原因
Ethics & human research Pub Date : 2024-04-17 DOI: 10.1002/eahr.500210
Kara Berwanger, Jon F. Merz
{"title":"What Is “Key Information”? Consideration of the Reasons People Do or Do Not Take Part in Research","authors":"Kara Berwanger,&nbsp;Jon F. Merz","doi":"10.1002/eahr.500210","DOIUrl":"https://doi.org/10.1002/eahr.500210","url":null,"abstract":"<div>\u0000 \u0000 <p>We performed a qualitative review of 50 consent forms posted on Clinicaltrials.gov, examining the content of key information sections. We found that key information disclosures are typically focused on procedures, risks, potential benefits, and alternatives. Drawing upon reviews of the large literature examining the reasons people do or do not take part in research, we propose that these disclosures should be based more directly on what we know to be the real reasons why people choose to take part or refuse participation. We propose key information language for consideration by researchers and institutional review boards.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 3","pages":"26-33"},"PeriodicalIF":0.0,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140559744","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
Should Children Be Included in Human Challenge Studies? 人类挑战研究是否应包括儿童?
Ethics & human research Pub Date : 2024-04-17 DOI: 10.1002/eahr.500208
Ariella Binik
{"title":"Should Children Be Included in Human Challenge Studies?","authors":"Ariella Binik","doi":"10.1002/eahr.500208","DOIUrl":"https://doi.org/10.1002/eahr.500208","url":null,"abstract":"<div>\u0000 \u0000 <p>Human challenge studies, in which human research subjects are intentionally exposed to pathogens to contribute to scientific knowledge, raise many ethical complexities. One controversial question is whether it is ethically permissible to include children as participants. Commentary of the past decades endorses the exclusion of children, while new guidance suggests that pediatric human challenge studies can be ethically permissible. This paper argues that neither children's exclusion nor their inclusion are well justified. I examine and reject three arguments for exclusion, but suggest that these arguments establish pediatric human challenge studies as a complex ethical category of research that requires caution. I then argue for a strong presumption against children's inclusion, by drawing on an analogy to children's inclusion in phase I trials, emphasizing a requirement of necessity, and suggesting that accommodating children's vulnerability promotes an age de-escalation approach for pediatric human challenge studies research. In the final section, I suggest a procedure for ethics review.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 3","pages":"2-15"},"PeriodicalIF":0.0,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/eahr.500208","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140559742","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
Ethics in Mental Health Research with Haitian Migrants: Lessons from a Community-Based Study in Santiago, Chile 海地移民心理健康研究中的伦理问题:智利圣地亚哥社区研究的启示
Ethics & human research Pub Date : 2024-04-17 DOI: 10.1002/eahr.500209
Francesca McLaren, Mercedes Mercado, Nicolás Montalva, Loreto Watkins, Andy Antipichun, Judeline Cheristil, Teresita Rocha-Jiménez
{"title":"Ethics in Mental Health Research with Haitian Migrants: Lessons from a Community-Based Study in Santiago, Chile","authors":"Francesca McLaren,&nbsp;Mercedes Mercado,&nbsp;Nicolás Montalva,&nbsp;Loreto Watkins,&nbsp;Andy Antipichun,&nbsp;Judeline Cheristil,&nbsp;Teresita Rocha-Jiménez","doi":"10.1002/eahr.500209","DOIUrl":"https://doi.org/10.1002/eahr.500209","url":null,"abstract":"<div>\u0000 \u0000 <p>Migration research poses several unique challenges and opportunities. Conducting ethical global health practice, especially when studying migrant mental health, is of particular concern. This article explores seven challenges and lessons learned in our mixed-methods study conducted to assess the impact of the migration experience on Haitian migrants’ mental health in Santiago, Chile. The primary challenges were recruiting in a highly mobile population, building trust and community participation, overcoming language barriers, safety considerations during the Covid-19 pandemic, mitigating potential negative impacts of research on the community, providing psychological support, and finding meaningful ways to benefit the community. We propose moving toward a better and more ethical migrant research practice by ensuring language accessibility, hiring community members for the study team, working with local institutions and nongovernmental organizations, and maintaining sustainable connections.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 3","pages":"16-25"},"PeriodicalIF":0.0,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140559743","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 Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study 转化研究与健康公平:镰状细胞病基因疗法案例研究
Ethics & human research Pub Date : 2024-04-17 DOI: 10.1002/eahr.500211
Mary A. Majumder, Titilope Fasipe
{"title":"Translational Research and Health Equity: Gene Therapies for Sickle Cell Disease as a Case Study","authors":"Mary A. Majumder,&nbsp;Titilope Fasipe","doi":"10.1002/eahr.500211","DOIUrl":"https://doi.org/10.1002/eahr.500211","url":null,"abstract":"<div>\u0000 \u0000 <p>In August of 2023, the National Academies of Science, Engineering, and Medicine published a timely report titled “Toward Equitable Innovation in Health and Medicine: A Framework.” Here, we review some of the key contributions of the report, focusing on two dimensions of equity: input equity and deployment equity. We then use the example of new gene therapies to treat sickle cell disease (SCD) as a case study of input and deployment equity in translational research. The SCD case study illustrates the need for a kind of translational bioethics with deep understanding of lived experiences and clinical realities as well as a high degree of economic and policy sophistication.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 3","pages":"34-39"},"PeriodicalIF":0.0,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140559745","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
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
{"title":"Returning Clinically Relevant Research Results to Participants: Guidelines for Investigators and the IRB","authors":"Amy Waltz,&nbsp;Bethany Johnson,&nbsp;Peter H. Schwartz","doi":"10.1002/eahr.500204","DOIUrl":"10.1002/eahr.500204","url":null,"abstract":"<div>\u0000 \u0000 <p>In 2019, the revised Common Rule required informed consent documents for research to include a statement about whether clinically relevant research results would be returned to research participants. While there are national discussions regarding the return of results, these do not provide specific guidance about how institutional review boards (IRBs) should address this issue. Through a year-long process involving IRB staff and leadership, science and bioethics faculty members, community IRB members, and others, Indiana University's human research protection program created a framework that offers a clear categorization of types of results for researchers to consider returning, provides language for informed consent documents, and describes an active but intentionally limited role for the IRB. In this article, we describe this framework and its rationale as a model for other universities and, more generally, as a model for balancing the need to protect human subjects with efforts to limit the burdens on researchers and the IRB.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 2","pages":"22-29"},"PeriodicalIF":0.0,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140040569","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
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
{"title":"Should Researchers Destroy Audio or Video Recordings?","authors":"David B. Resnik,&nbsp;Alison Antes,&nbsp;Jessica Mozersky","doi":"10.1002/eahr.500205","DOIUrl":"10.1002/eahr.500205","url":null,"abstract":"<div>\u0000 \u0000 <p>It is a common practice in qualitative research to transcribe audio or video files from interviews or focus groups and then destroy the files at some future time, usually after validating the transcript or concluding the research. We argue that it is time to rethink this practice and that retention of original qualitative data—including audio and video recordings—should be the default stance in most cases.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 2","pages":"30-35"},"PeriodicalIF":0.0,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140040570","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
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,&nbsp;Deanna Erickson,&nbsp;Joel Hoffman,&nbsp;Lucinda Johnson,&nbsp;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
{"title":"Rapid Review of Therapy Protocols for Public Health Emergencies","authors":"Bruce G. Gordon,&nbsp;Abigail E. Lowe,&nbsp;Christopher J. Kratochvil","doi":"10.1002/eahr.500203","DOIUrl":"10.1002/eahr.500203","url":null,"abstract":"<div>\u0000 \u0000 <p>How research during a public health emergency is conducted is recognized as essential to the public health response to that emergency. Such research needs to undergo substantive and meaningful ethical review in a timely manner. Rapid ethical review may be accomplished through a number of mechanisms, including use of local rapid-response institutional review boards (IRBs). We describe use of such a model in the setting of the 2014 Ebola virus disease epidemic and the Rapid-Response IRB's subsequent transition to a multisite single IRB model during the current Covid-19 pandemic. The rapid-response review model is characterized by a small IRB with extensive use of alternate members with specific expertise and by close collaboration with the investigator in an iterative process.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 2","pages":"16-21"},"PeriodicalIF":0.0,"publicationDate":"2024-03-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140040568","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
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
{"title":"Participant Misrepresentation in Online Focus Groups: Red Flags and Proactive Measures","authors":"Lesley Andrew,&nbsp;Emily Gizzarelli,&nbsp;Mohamed Estai,&nbsp;Ruth Wallace","doi":"10.1002/eahr.500198","DOIUrl":"10.1002/eahr.500198","url":null,"abstract":"<div>\u0000 \u0000 <p>Covid-19 public health measures prompted a significant increase in online research. This approach has several benefits over face-to-face data-collection methods, including lower cost and wider geographical reach of participants. Yet when the online data-collection instrument is a survey, there are also well-documented drawbacks of participant misrepresentation and related data-authenticity issues. However, the scholarly literature has not looked at participant misrepresentation in online focus-group empirical research. This case study communicates a concerning situation that arose during our research project: dishonest participant behavior threatened the integrity and validity of our data collected through online focus-group sessions as well as e-surveys. We describe the study context, initial red flags alerting us to the issue, subsequent investigations, and implications for research ethics, funding, and data quality. We conclude with a discussion of potential steps to safeguard future online focus-group research against similar issues.</p>\u0000 </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 1","pages":"37-42"},"PeriodicalIF":0.0,"publicationDate":"2024-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139492280","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
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