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Journal of Empirical Research on Human Research Ethics最新文献

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Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya. 参与青年艾滋病毒感染者研究的伦理考虑:肯尼亚青年、他们的照顾者和主题专家的观点。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-10-01 Epub Date: 2023-08-13 DOI: 10.1177/15562646231193949
Ashley Chory, Winstone Nyandiko, Emma Gillette, Michael Scanlon, Josephine Aluoch, Hillary Koros, Dennis Munyoro, Celestine Ashimosi, Whitney Beigon, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman, Violet Naanyu
{"title":"Ethical Considerations for Engaging Youth Living with HIV in Research: Perspectives from Youth, Their Caregivers and Subject Matter Experts in Kenya.","authors":"Ashley Chory, Winstone Nyandiko, Emma Gillette, Michael Scanlon, Josephine Aluoch, Hillary Koros, Dennis Munyoro, Celestine Ashimosi, Whitney Beigon, Janet Lidweye, Jack Nyagaya, Allison DeLong, Rami Kantor, Rachel Vreeman, Violet Naanyu","doi":"10.1177/15562646231193949","DOIUrl":"10.1177/15562646231193949","url":null,"abstract":"<p><p><b>Introduction:</b> Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. <b>Methods:</b> This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. <b>Results:</b> Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. <b>Conclusion:</b> Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11325439/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10334795","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute. 研究参与者对药物基因组学研究个体结果的偏好：以乌干达HIV研究所为例。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-10-01 Epub Date: 2023-07-13 DOI: 10.1177/15562646231187434
Sylvia Nabukenya, Catriona Waitt, Ronald Senyonga, Barbara Castelnuovo, Ian Guyton Munabi, David Kyaddondo, Erisa S Mwaka
{"title":"Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.","authors":"Sylvia Nabukenya, Catriona Waitt, Ronald Senyonga, Barbara Castelnuovo, Ian Guyton Munabi, David Kyaddondo, Erisa S Mwaka","doi":"10.1177/15562646231187434","DOIUrl":"10.1177/15562646231187434","url":null,"abstract":"<p><p>Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5 deliberative focus group discussions with 30 purposively selected research participants. Almost all (98%) participants wanted to receive individual pharmacogenomics research results. Reasons for the desire to receive results were reciprocity for valuable time and effort, preparing for future eventualities, and the right to information about their health. Overall, participants desire to receive feedback from pharmacogenomics research, particularly if results are well established and clinically actionable.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10648306/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10645957","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Book Review: Seeking a Research-Ethics Covenant in the Social Sciences by Will C. van den Hoonaard 书评:在社会科学中寻求研究伦理契约威尔·c·范登·胡纳德著
4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-09-10 DOI: 10.1177/15562646231200910
Heidi Matisonn
{"title":"Book Review: <i>Seeking a Research-Ethics Covenant in the Social Sciences</i> by Will C. van den Hoonaard","authors":"Heidi Matisonn","doi":"10.1177/15562646231200910","DOIUrl":"https://doi.org/10.1177/15562646231200910","url":null,"abstract":"","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136072828","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
A Questionnaire Survey on Chinese Translation and Interpreting Scholars' Publication Pressure and Its Impact on Research Quality and Publishing Ethics. 中国笔译学者发表压力及其对研究质量和出版伦理影响的问卷调查
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231164112
Ying Cui, Xiao Liu
{"title":"A Questionnaire Survey on Chinese Translation and Interpreting Scholars' Publication Pressure and Its Impact on Research Quality and Publishing Ethics.","authors":"Ying Cui,&nbsp;Xiao Liu","doi":"10.1177/15562646231164112","DOIUrl":"https://doi.org/10.1177/15562646231164112","url":null,"abstract":"<p><p>The issue of publishing ethics has been drawing attention from scholars of various fields, and this study focuses on the situation in translation and interpreting (T&I) studies. It surveys Chinese T&I researchers' publication pressure and its impact on their research quality and publishing ethics via an online questionnaire and follow-up telephone interviews. Altogether, 124 respondents filled out the questionnaire, and 14 of them took part in the interviews. Data analyses reveal that the pressure caused by the limited number of T&I journals is the highest, there is significant correlation between this type of pressure and publishing ethics, and there is also significant association between publication pressure and research quality. The follow-up interviews confirmed the findings, and the discussions with interviewees suggest that using alternative evaluation methods such as the representative work method might be a way out of the current publishing dilemma.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9623542","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Reporting Ethics Approval in Articles on Criminality. An Audit of Adherence to Swedish Legislation. 在犯罪文章中报告道德认可。对瑞典法律遵守情况的审计。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231168980
Kjell Asplund, Kerstin Hulter Åsberg
{"title":"Reporting Ethics Approval in Articles on Criminality. An Audit of Adherence to Swedish Legislation.","authors":"Kjell Asplund,&nbsp;Kerstin Hulter Åsberg","doi":"10.1177/15562646231168980","DOIUrl":"https://doi.org/10.1177/15562646231168980","url":null,"abstract":"<p><p>According to the Swedish Ethics Review Act, research involving personal data on crimes should undergo independent ethics review. To explore the reporting of ethics approval, we extracted information from articles with Swedish personal data on crimes published in 2013-2021. Of the identified 298 articles, 92 (31%) failed to report ethics approval. Failures were particularly common in articles with a qualitative design, single or few authors and when there was a social science focus. Failures varied markedly between universities. We conclude that failures to report compulsory ethics approval are common in articles involving personal data on crime and that these failures vary markedly with the research setting. Several indicators of poor adherence to the Ethics Review Act have been identified.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9623564","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study. 遗传和基因组研究人员对乌干达合作研究中生物样本共享的看法:一项定性研究。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231171289
David Kaawa-Mafigiri, Deborah Ekusai Sebatta, Ian Munabi, Erisa Sabakaki Mwaka
{"title":"Genetic and Genomic Researchers' Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study.","authors":"David Kaawa-Mafigiri,&nbsp;Deborah Ekusai Sebatta,&nbsp;Ian Munabi,&nbsp;Erisa Sabakaki Mwaka","doi":"10.1177/15562646231171289","DOIUrl":"https://doi.org/10.1177/15562646231171289","url":null,"abstract":"<p><p>Numerous ethical, legal, and social issues arise with biological sample sharing. The study explored the perspectives of genetic and genomic researchers on the sharing of biological samples in international collaborative research. Qualitative in-depth interviews were conducted with 15 researchers. Participants expressed positive attitudes towards biobanking and appreciated the benefits of cross-border sharing of biological samples but noted that this practice had adversely affected local capacity building efforts. There was limited understanding of the ethical and regulatory frameworks governing sample sharing. Researchers emphasized the importance of respecting cultural values in biobanking research. Issues concerning poor governance and inequitable benefit sharing were also raised. There is a need for fair and equitable international collaborations where all researchers are treated with respect and as equal partners.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10330227/pdf/nihms-1890072.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9769221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Student Moral Foundations in the Context of Research Misbehavior: An Experimental Study. 研究不当行为背景下的学生道德基础:一项实验研究。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231168919
Ivan Buljan, Ružica Tokalić, Vicko Tomić, Marin Viđak, Ana Marušić
{"title":"Student Moral Foundations in the Context of Research Misbehavior: An Experimental Study.","authors":"Ivan Buljan,&nbsp;Ružica Tokalić,&nbsp;Vicko Tomić,&nbsp;Marin Viđak,&nbsp;Ana Marušić","doi":"10.1177/15562646231168919","DOIUrl":"https://doi.org/10.1177/15562646231168919","url":null,"abstract":"<p><p>The study aimed to examine whether the use of words related to different moral foundations can predict the perceived severity of research misconduct. We gave two groups of participants, undergraduate medical students, the same hypothetical scenarios of research misconduct cases containing words related to different aspects of morality, and asked them to assess how inappropriate the described behavior was. Students ranked the described behaviors differently by the inappropriateness of the behavior, but the group wording was not a significant predictor of appropriateness. The reasons for the ranking were not related to any standardized procedures for research integrity but were related to the moral assessment of the students, which was assessed using qualitative approach. The results of this study implicate that personal moral views are an important part in research integrity training.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9997081","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Informed Consent and Debriefing When Deceiving Participants: A Systematic Review of Research Ethics Guidelines. 欺骗参与者时的知情同意和汇报:研究伦理准则的系统回顾。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231173477
Kamiel Verbeke, Tomasz Krawczyk, Dieter Baeyens, Jan Piasecki, Pascal Borry
{"title":"Informed Consent and Debriefing When Deceiving Participants: A Systematic Review of Research Ethics Guidelines.","authors":"Kamiel Verbeke,&nbsp;Tomasz Krawczyk,&nbsp;Dieter Baeyens,&nbsp;Jan Piasecki,&nbsp;Pascal Borry","doi":"10.1177/15562646231173477","DOIUrl":"https://doi.org/10.1177/15562646231173477","url":null,"abstract":"<p><p>Informed consent and debriefing of research participants in studies that use deception are ethical safeguards for which existing scholarly work on their implementation remains variable and insufficiently clear. A systematic review of research ethics guidelines was conducted to sketch a picture of whether, why and how informed consent and debriefing are recommended when using deception. Documents roughly agreed on several general principles, but varied significantly in the specifics of why and whether these safeguards are necessary, in which conditions and how they should be implemented. Various aspects that appear in the literature could not be found in the guidelines. In our review, guidance was integrated and showed a variation of implementation strategies that could help in contextualizing these safeguards.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9625787","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Building Capacity for Research Ethics Committees in Uganda. 乌干达研究伦理委员会的能力建设。
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231177410
Provia Ainembabazi, Barbara Castelnuovo, Stephen Okoboi, Walter Joseph Arinaitwe, Lydia Mpanga Sebuyira, Rosalind Parkes-Ratanshi, Pauline Byakika-Kibwika
{"title":"Building Capacity for Research Ethics Committees in Uganda.","authors":"Provia Ainembabazi,&nbsp;Barbara Castelnuovo,&nbsp;Stephen Okoboi,&nbsp;Walter Joseph Arinaitwe,&nbsp;Lydia Mpanga Sebuyira,&nbsp;Rosalind Parkes-Ratanshi,&nbsp;Pauline Byakika-Kibwika","doi":"10.1177/15562646231177410","DOIUrl":"https://doi.org/10.1177/15562646231177410","url":null,"abstract":"<p><p>Timely communication from Research Ethics Committees (REC) to researchers is essential to meet deadlines. We conducted a capacity building program for REC members, REC and research administrators, and researchers from seven RECs in Uganda in order to improve the research regulatory approval cycle. The training was delivered from March 2020 to July 2021. Trainees were evaluated using pre and post-training tests. There was an increase in the average score from 38% to 53% in pre and post-training test respectively for the personal effectiveness and leadership programme for REC and research administrators. There was an increase in the average score of from 53.9% to 70.1% in pre and post-training test respectively for training on emerging and complex study designs. We achieved shift in knowledge and skills in use of the National Research Information Management System. We recommend regular training of REC members and administrators for efficient review of research protocols.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10330252/pdf/nihms-1898762.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9756819","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Documentary Assessment of the Abilities of Kyrgyzstan's Research Ethics Committees During Public Health Emergency and Non-Emergency Situations. 吉尔吉斯斯坦突发公共卫生事件和非突发公共卫生事件中研究伦理委员会能力的文献评估
IF 1.3 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2023-07-01 DOI: 10.1177/15562646231176711
Tamara Kudaibergenova, Muiz Ibrahim, Nityanand Jain, Janis Vetra
{"title":"Documentary Assessment of the Abilities of Kyrgyzstan's Research Ethics Committees During Public Health Emergency and Non-Emergency Situations.","authors":"Tamara Kudaibergenova,&nbsp;Muiz Ibrahim,&nbsp;Nityanand Jain,&nbsp;Janis Vetra","doi":"10.1177/15562646231176711","DOIUrl":"https://doi.org/10.1177/15562646231176711","url":null,"abstract":"<p><p>Institutional Research Ethics Committees (RECs) play crucial roles in the impartial and competent review of scientific research, particularly during public health emergencies. In this report, we examined their ability and capacity to provide this basic service during public health emergencies and non-emergency situations. Our qualitative documentary analysis revealed that there are currently no legal regulations guiding the activities of Kyrgyz RECs during public health emergencies. In addition, major policy gaps exist in how RECs should operate in non-emergency circumstances. This lack of guidance highlights the urgent need to develop and implement ethical guidelines to meet the evolving needs of such emergencies. Our findings underscore the growing urgency of supporting capacity building of RECs to respond effectively to future pandemics and other public health crises.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10251458/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10281673","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
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