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Journal of Empirical Research on Human Research Ethics最新文献

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Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research: A Qualitative Study of the Perspectives of Research Ethics Committee Members and National Research Regulators in a low Resource Setting. 了解遗传学和基因组学研究中社区有效参与的主要考虑因素：对低资源环境下研究伦理委员会成员和国家研究监管机构观点的定性研究。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-10-01 Epub Date: 2024-10-21 DOI: 10.1177/15562646241289015
Harriet Nankya, Vincent Pius Alibu, Edward Wamala, Enock Matovu, John Barugahare
{"title":"Understanding of Key Considerations for Effective Community Engagement in Genetics and Genomics Research: A Qualitative Study of the Perspectives of Research Ethics Committee Members and National Research Regulators in a low Resource Setting.","authors":"Harriet Nankya, Vincent Pius Alibu, Edward Wamala, Enock Matovu, John Barugahare","doi":"10.1177/15562646241289015","DOIUrl":"10.1177/15562646241289015","url":null,"abstract":"<p><p>To attain effective community engagement (CE) for genetics and genomics research (GGR) is a challenge. This study aimed to analyzed participants' perspectives on how to attain effective CE for GGR in Uganda. A cross-sectional qualitative study involving in-depth interviews with twenty research ethics committee members and three national research regulators was conducted. GGR is faced with; low genetic literacy among stakeholders, social implications, cultural attitudes towards GGR, and lack of specific guidelines for CE in GGR. Attaining effective CE in GGR should involve; development of guidelines for GGR streamlining CE; boosting stakeholders' Knowledge in GGR and CE; engagement beyond sensitization; and consensus decision-making. Overall, attaining effective CE in GGR requires addressing the key aspects unique to GGR.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"197-207"},"PeriodicalIF":1.7,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142479535","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
Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics. 准备，开始，分类！社区参与实证生物伦理学卡片分类用户指南》。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-10-01 Epub Date: 2024-11-11 DOI: 10.1177/15562646241281802
Karen M Meagher, Sara Watson, Lia Kaz, Shawneequa Callier, Anya E R Prince, R Jean Cadigan
{"title":"Ready, Set, Sort! A User-Guide to Card Sorts for Community-Engaged Empirical Bioethics.","authors":"Karen M Meagher, Sara Watson, Lia Kaz, Shawneequa Callier, Anya E R Prince, R Jean Cadigan","doi":"10.1177/15562646241281802","DOIUrl":"10.1177/15562646241281802","url":null,"abstract":"<p><p>We demonstrate the fruitfulness of using card sort activities as an engagement method by detailing community consultation for ethical, legal, and social implications of sociogenomics. Readers are provided with a user-guide for card sort engagement through: (1) an overview of the card sort activity and its merits for engagement, (2) detailed methods of sorting for values-elicitation and prioritization goals, and (3) strategies to design this approach for other participatory research designs. Our intent is to add to meaningful exchanges between community engaged researchers and empirical bioethicists.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"186-196"},"PeriodicalIF":1.7,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11630629/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142631904","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
How Making Consent Procedures More Interactive can Improve Informed Consent: An Experimental Study and Replication. 让同意程序更具互动性如何改善知情同意：实验研究与复制》。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-08-28 DOI: 10.1177/15562646241280208
Marije Aan Het Rot, Ineke Wessel
{"title":"How Making Consent Procedures More Interactive can Improve Informed Consent: An Experimental Study and Replication.","authors":"Marije Aan Het Rot, Ineke Wessel","doi":"10.1177/15562646241280208","DOIUrl":"https://doi.org/10.1177/15562646241280208","url":null,"abstract":"<p><p>Prospective research participants do not always retain information provided during consent procedures. This may be relatively common in online research and is considered particularly problematic when the research carries risks. Clinical psychology studies using the trauma film paradigm, which aims to elicit an emotional response, provide an example. In the two studies presented here, 112-126 participants were informed they would be taking part in an online study using a variant of this paradigm. The information was provided across five digital pages using either a standard or an interactive format. In both studies, compared to the control condition, participants in the interactive condition showed more retention of information. However, this was only found for information about which they had been previously asked via the interactive format. Therefore, the impact of adding interactivity to digital study information was limited. True informed consent for an online study may require additional measures.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"15562646241280208"},"PeriodicalIF":1.7,"publicationDate":"2024-08-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142082433","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
Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review. 加拿大青少年危险行为研究同意书的获取：范围审查》。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-05-15 DOI: 10.1177/15562646241253953
Lillian MacNeill, A Luke MacNeill, Shelley Doucet, Alison Luke, Alex Goudreau
{"title":"Obtaining Consent for Research on Risky Behaviours Among Adolescents in Canada: A Scoping Review.","authors":"Lillian MacNeill, A Luke MacNeill, Shelley Doucet, Alison Luke, Alex Goudreau","doi":"10.1177/15562646241253953","DOIUrl":"10.1177/15562646241253953","url":null,"abstract":"<p><p>This scoping review explores current practices for obtaining consent in research on risky behaviours among adolescents in Canada. The JBI methodology for scoping reviews was used. The database search was conducted in August 2021 and updated in November 2022. Papers published in 2010 or later were included. Extracted data included study characteristics, sample characteristics, and consent procedures. The review included 83 reports covering 57 studies. Nearly 60% of studies relied on adolescent self-consent for participation. Adolescent self-consent was more common than parental/guardian consent for studies using in-person research methods, older adolescent groups, and particularly vulnerable populations. Parental/guardian consent was more common for studies using younger age groups and general population samples. Adolescent self-consent was more common than parental/guardian consent for most risky behaviours covered by this review. These results provide insight into current consent practices in this area and offer guidance to researchers and institutional review boards in Canada.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"124-134"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298111/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140946444","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
Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing. 澳大利亚人对基因组数据共享背景下放弃同意的态度。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 DOI: 10.1177/15562646241261848
Lyndsay Newett, Rebekah McWhirter, Lisa Eckstein, Vanessa Warren, Dianne Nicol
{"title":"Australian Attitudes Towards Waivers of Consent Within the Context of Genomic Data Sharing.","authors":"Lyndsay Newett, Rebekah McWhirter, Lisa Eckstein, Vanessa Warren, Dianne Nicol","doi":"10.1177/15562646241261848","DOIUrl":"10.1177/15562646241261848","url":null,"abstract":"<p><p>This research identifies the circumstances in which Human Research Ethics Committees (HRECs) are trusted by Australians to approve the use of genomic data - without express consent - and considers the impact of genomic data sharing settings, and respondent attributes, on public trust. Survey results (<i>N</i> = 3013) show some circumstances are more conducive to public trust than others, with waivers endorsed when future research is beneficial and when privacy is protected, but receiving less support in other instances. Still, results imply attitudes are influenced by more than these specific circumstances, with different data sharing settings, and participant attributes, affecting views. Ultimately, this research raises questions and concerns in relation to the criteria HRECs use when authorising waivers of consent in Australia.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"19 3","pages":"113-123"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298119/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141890692","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
Assessing the Decision-Making Capabilities of Artificial Intelligence Platforms as Institutional Review Board Members. 评估人工智能平台作为机构审查委员会成员的决策能力。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-06-17 DOI: 10.1177/15562646241263200
Kannan Sridharan, Gowri Sivaramakrishnan
{"title":"Assessing the Decision-Making Capabilities of Artificial Intelligence Platforms as Institutional Review Board Members.","authors":"Kannan Sridharan, Gowri Sivaramakrishnan","doi":"10.1177/15562646241263200","DOIUrl":"10.1177/15562646241263200","url":null,"abstract":"<p><p><b>Background:</b> Institutional review boards (IRBs) face delays in reviewing research proposals, underscoring the need for optimized standard operating procedures (SOPs). This study assesses the abilities of three artificial intelligence (AI) platforms to address IRB challenges and draft essential SOPs. <b>Methods:</b> An observational study was conducted using three AI platforms in 10 case studies reflecting IRB functions, focusing on creating SOPs. The accuracy of the AI outputs was assessed against good clinical practice (GCP) guidelines. <b>Results:</b> The AI tools identified GCP issues, offered guidance on GCP violations, detected conflicts of interest and SOP deficiencies, recognized vulnerable populations, and suggested expedited review criteria. They also drafted SOPs with some differences. <b>Conclusion:</b> AI platforms could aid IRB decision-making and improve review efficiency. However, human oversight remains critical for ensuring the accuracy of AI-generated solutions.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"83-91"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141421609","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
Evaluation of a Training Program on Gender Mainstreaming in Health Research Evaluation at the Senegalese National Research Ethics Committee. 塞内加尔国家研究伦理委员会健康研究评估中的性别主流化培训项目评估。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-03-18 DOI: 10.1177/15562646241238816
Guillermo Z Martínez-Pérez, Carme Campoy Guerrero, Brigitte Bagnol, Samba Cor Sarr, El Hadji Mamadou Mbaye, Ousmane Diouf, El Hadji Ibrahima Touré, Viviane Mbengue, Oumy Ndiaye, Farah Nabil
{"title":"Evaluation of a Training Program on Gender Mainstreaming in Health Research Evaluation at the Senegalese National Research Ethics Committee.","authors":"Guillermo Z Martínez-Pérez, Carme Campoy Guerrero, Brigitte Bagnol, Samba Cor Sarr, El Hadji Mamadou Mbaye, Ousmane Diouf, El Hadji Ibrahima Touré, Viviane Mbengue, Oumy Ndiaye, Farah Nabil","doi":"10.1177/15562646241238816","DOIUrl":"10.1177/15562646241238816","url":null,"abstract":"<p><p>Health research must be of high ethical and scientific quality and consider the needs and experiences of women, men, and nonbinary individuals. National Research Ethics Committees (RECs) are in a strategic position to impede sex- and gender-blind research. In 2020 and 2021, training programs on gender mainstreaming and sex and gender approaches in research evaluation were launched in Senegal. They were evaluated through a mixture of qualitative and quantitative methods. Knowledge acquisition was 16.67%, 8.54%, and 28.42% for the trainees of 2021, 2020, and those who attended the training in both years, respectively. Gender mainstreaming was reported as pertinent in research ethics by 74% of participants. This training is expected to catalyze gender-transformative research ethics in West Africa.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"103-112"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144496","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
Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research. 平衡伦理与文化：关于非洲研究中基于个人的同意模式的伦理-文化和实施挑战的范围审查》。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-03-18 DOI: 10.1177/15562646241237669
Richard Appiah, Giuseppe Raviola, Benedict Weobong
{"title":"Balancing Ethics and Culture: A Scoping Review of Ethico-Cultural and Implementation Challenges of the Individual-Based Consent Model in African Research.","authors":"Richard Appiah, Giuseppe Raviola, Benedict Weobong","doi":"10.1177/15562646241237669","DOIUrl":"10.1177/15562646241237669","url":null,"abstract":"<p><p><b>Objective:</b> This review explores the ethico-cultural and implementation challenges associated with the individual-based informed consent (IC) model in the relatively collectivistic African context and examines suggested approaches to manage them. <b>Methods:</b> We searched four databases for peer-reviewed studies published in English between 2000 to 2023 that examined the ethico-cultural and implementation challenges associated with the IC model in Africa. <b>Results:</b> Findings suggest that the individual-based IC model largely misaligns with certain African social values and ethos and subverts the authority and functions of community gatekeepers. Three recommendations were proffered to manage these challenges, that researchers should: adopt a multi-step approach to IC, conduct a rapid ethical assessment, and generate an African-centered IC model. <b>Conclusions:</b> A pluriversal, context-specific, multi-step IC model that critically harmonizes the cultural values of the local population and the general principles of IC can minimize ethics dumping, safeguard the integrity of the research process, and promote respectful engagement.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"143-172"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11298123/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140144495","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
The Ethics of Using Artificial Intelligence in Qualitative Research. 在定性研究中使用人工智能的伦理。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-06-17 DOI: 10.1177/15562646241262659
David T Marshall, David B Naff
{"title":"The Ethics of Using Artificial Intelligence in Qualitative Research.","authors":"David T Marshall, David B Naff","doi":"10.1177/15562646241262659","DOIUrl":"10.1177/15562646241262659","url":null,"abstract":"<p><p>Artificial Intelligence (AI) and other large language models are rapidly infiltrating the world of education and educational research. These new technological developments raise questions about use and ethics throughout the world of educational research, particularly for qualitative methods given the philosophical and structural foundations of its associated designs. This paper seeks to interrogate the perceived ethics around the use of AI in qualitative research and draws on survey data from qualitative researchers (<i>n</i> = 101) collected from April-May 2023. Findings indicate that researchers were more apt to embrace the use of AI for transcription purposes, and to a lesser extent for preliminary coding. Researchers from high research productivity (R1) universities were generally less accepting of AI's use in the research process than other researchers.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"92-102"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141332391","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
Contraception Requirements in Clinical Research Consent Forms: Assessing and Supporting Gender Inclusive Practices. 临床研究同意书中的避孕要求：评估和支持性别包容实践。
IF 1.7 4区 哲学
Journal of Empirical Research on Human Research Ethics Pub Date : 2024-07-01 Epub Date: 2024-03-11 DOI: 10.1177/15562646241238301
Tara Coffin, Erin Brower, Sharad Adekar
{"title":"Contraception Requirements in Clinical Research Consent Forms: Assessing and Supporting Gender Inclusive Practices.","authors":"Tara Coffin, Erin Brower, Sharad Adekar","doi":"10.1177/15562646241238301","DOIUrl":"10.1177/15562646241238301","url":null,"abstract":"<p><p>Gender-diverse individuals are underserved in clinical research settings. Reliance on gendered language throughout the consent process for clinical research contributes to the marginalization of these populations. The research objective was to assess use of gender-inclusive language used to describe the contraception requirement in consent forms. We categorized and analyzed contraception language in 289 clinical trial consent forms using a deductive and summative content analysis approach. We found that 79% (n = 227) of consent forms contained gender-inclusive language, 80% (n = 231) used terms that fell under the biological sex language, and 91% (n = 264) used gendered language. No consent forms used exclusively gender-inclusive language and the majority 63% (n = 182) featuring a combination of all three language types. There were many consent forms which would have been entirely gender-inclusive language if section headings with references to biological-sex-specific contraceptives were excluded, suggesting that gender-inclusive language may be attainable with minor revisions.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":" ","pages":"135-142"},"PeriodicalIF":1.7,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140095069","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
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