Journal of Empirical Research on Human Research Ethics最新文献

{"title":"Providing Public Engagement Training to Build Connections Between the Community and Research Ethics Professionals: A Pilot Project.","authors":"Ann R Johnson, Nalini M Nadkarni, Caitlin Q Weber","doi":"10.1177/15562646221126282","DOIUrl":"https://doi.org/10.1177/15562646221126282","url":null,"abstract":"There is growing interest for research ethics professionals to engage with members of the public, yet they often lack the training needed to engage effectively. The STEM Ambassador Program provides a promising framework for training research ethics professionals to form authentic community connections and carry out effective engagement activities based on shared interests and values. The experiences of ten research administrators who participated in a pilot of the STEM Ambassador training for research ethics professionals are presented. Post-training surveys of the research administrators indicate that they valued the training and the skills obtained, and intend to continue with public engagement activities with support of their leadership.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 5","pages":"545-553"},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10529669","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}

{"title":"Equitable Design and Use of Digital Surveillance Technologies During COVID-19: Norms and Concerns.","authors":"Bridget Pratt, Michael Parker, Susan Bull","doi":"10.1177/15562646221118127","DOIUrl":"10.1177/15562646221118127","url":null,"abstract":"<p><p>Given the unprecedented scale of digital surveillance in the COVID-19 pandemic, designing and implementing digital technologies in ways that are equitable is critical now and in future epidemics and pandemics. Yet to date there has been very limited consideration about what is necessary to promote their equitable design and implementation. In this study, literature relating to the use of digital surveillance technologies during epidemics and pandemics was collected and thematically analyzed for ethical norms and concerns related to equity and social justice. Eleven norms are reported, including procedural fairness and inclusive approaches to design and implementation, designing to rectify or avoid exacerbating inequities, and fair access. Identified concerns relate to digital divides, stigma and discrimination, disparate risk of harm, and unfair design processes. We conclude by considering what dimensions of social justice the norms promote and whether identified concerns can be addressed by building the identified norms into technology design and implementation practice.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 5","pages":"573-586"},"PeriodicalIF":1.7,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9676107/pdf/10.1177_15562646221118127.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10476141","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}

{"title":"Research Site Anonymity in Context.","authors":"Mzikazi Nduna,&nbsp;Simangele Mayisela,&nbsp;Sadna Balton,&nbsp;Pumla Gobodo-Madikizela,&nbsp;Jabulani G Kheswa,&nbsp;Itumeleng P Khumalo,&nbsp;Tawanda Makusha,&nbsp;Maheshvari Naidu,&nbsp;Yandisa Sikweyiya,&nbsp;Sello L Sithole,&nbsp;Cily Tabane","doi":"10.1177/15562646221084838","DOIUrl":"https://doi.org/10.1177/15562646221084838","url":null,"abstract":"<p><p>This paper utilizes critical theory to interrogate and problematize the practice of anonymising research sites as an ethical imperative. The contributing authors conduct research in and with various communities in southern Africa, position themselves and work from and within diverse areas and specialities of the social sciences. This article is developed from their rich and wide spectrum of field experience with a great diversity of communities, but mainly the poorer, under-resourced, socially and economically marginalized. The authors strongly identify with these communities whose anonymity in published research is seen as marginalizing. Such research sites are places and communities where these researchers grew up and live in, and thus not just as peripheral or 'out there' entities. Therefore, the naming of research sites in this context is deemed as being ethical, out of respect for participants, for a contextually embedded understanding, and for well-targeted interventions and policy influence.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 5","pages":"554-564"},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10476204","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}

{"title":"Contract Cheating and Ghostwriting among University Students in Health Specialties.","authors":"Muaawia A Hamza,&nbsp;Faisal R Al Assadi,&nbsp;Abdulaziz A Khojah,&nbsp;Renad M AlHanaki,&nbsp;Nour T Alotaibi,&nbsp;Rawan M Kheimi,&nbsp;Abdullah H Salem,&nbsp;Sumayyia D Marar","doi":"10.1177/15562646221128418","DOIUrl":"https://doi.org/10.1177/15562646221128418","url":null,"abstract":"<p><p>Contract cheating and ghostwriting are forms of misconduct that are unethical and a serious academic issue, especially among healthcare professionals, as they directly impact patient health. To date, research on this area in the Middle East has been limited. Therefore, we used a validated self-administered questionnaire to investigate the awareness, perceptions, and reasons for these behaviors among 682 students in health specialties at five universities in Riyadh, Saudi Arabia. The majority of the students (60.1%) were unaware of the terms \"contract cheating\" and \"ghostwriting,\" and 69.5% had not received any prior training on integrity. However, having prior training had a positive effect on awareness levels, and respondents attending private universities were significantly more aware than those attending public universities. The factors that contributed to contract cheating behavior included poor time management, English language difficulties, and a lack of writing skills. These findings emphasize the need for integrity training at the national level to raise awareness.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 5","pages":"536-544"},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10823101","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}

{"title":"Invited Peer Commentary: Research Site Anonymity in Context.","authors":"Shenuka Singh,&nbsp;Penelope Engel-Hills","doi":"10.1177/19401612221138478","DOIUrl":"https://doi.org/10.1177/19401612221138478","url":null,"abstract":"The authors of the paper, Research site anonymity in context (Nduna et al., 2022) set out to utilize critical theory “to interrogate and problematize the practice of anonymizing research sites as an ethical imperative”. They emphasized that as black African scholars, engaged in diverse research within the domain of the social sciences, they identify closely with the communities where they conduct their research. The focus of the paper is the authors’ challenge to the ethical standard of anonymity that they suggest is imposed by the research ethics committees (RECs/IRBs) they apply to for ethical review and clearance. With regard to anonymity (or confidentiality) being an important ethical standard that should be negotiable in some contexts, we concur with the authors but believe there are lessons to be gained from a deeper interrogation of this topic than is presented in the paper. Hence, in order to unpack key elements of the paper and extend these to create the space for academic debate, we applied critical reflection as a process for making meaning. In this process, we start this commentary by first addressing definitions of confidentiality and anonymity as generally accepted ethical standards for research with human participants. Confidentiality in research is described as measures put in place by the researcher to prevent disclosure of the participants’ identity during and after the study has been completed while anonymity is used as a standard declaring that neither the researcher nor any other person will know the identity of the research participant/s (DoH, 2015). For the purpose of this commentary, we will accept the authors’ discussion point of anonymizing research sites which would have the standard of confidentiality imposed and not necessarily anonymity. This is because these sites would be known to the researchers if the argument is that they should be able to be identified. It is the outcome of this global standard of confidentiality or anonymity that RECs are expected to uphold and this can be perceived as the RECs imposing the need for anonymity on all research participants and sites. From there we will consider motivations for why and how anonymity as a standard in all research involving humans is challenged by the authors as being inappropriate in community-based research. We will then focus our attention on deepening the discussion of whether to maintain anonymity (or not) in research involving our South African communities as research sites. This discussion will draw from the issues as they are raised in the paper but will broaden the arguments presented by providing evidence from our own experiences, in the communities we research, to substantiate our position.","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 5","pages":"565-572"},"PeriodicalIF":1.3,"publicationDate":"2022-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10472630","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}

{"title":"A Study of a Culturally and Contextually Situated Multimedia Approach to Recruit a Hard-to-Reach Spanish-Speaking Population for a Randomized Control Trial (RCT).","authors":"Larimar Rodriguez, Cristina Murray-Krezan, Lidia Regino, Maria Tellez, Camille Vasquez, Virginia Sandoval, Daniel Perez Rodriguez, Blanca Pedigo, Janet Page-Reeves","doi":"10.1177/15562646221102682","DOIUrl":"10.1177/15562646221102682","url":null,"abstract":"<p><p>Study designs involving randomization can be difficult to communicate to participants, especially those with low literacy. The literature on strategies to explain research concepts is limited, especially for non-English speakers. We measured the effectiveness of a culturally and contextually situated multimedia approach to recruit a cohort of 60 female Mexican immigrants (FMI) to a randomized control trial (RCT) to reduce social isolation and depression. This strategy was designed to explain the concept of randomization, explain what participating in the research study entailed, and ensure informed consent. Potential participants viewed a presentation explaining the study and a video including animation with voice-over explaining the concept of randomization. We administered a pre/post survey. Respondents (<i>N</i> = 59) reported an increase in their understanding of randomization, intention to enroll, and attitude towards participating in research. We conclude that a culturally and contextually situated multimedia approach is an effective model when recruiting underrepresented populations with low literacy for RCTs.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 4","pages":"461-470"},"PeriodicalIF":1.7,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11307171/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9433806","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}

{"title":"Authors' Response to \"Invited Commentary on 'Combatting Neo-colonialism in Health Research: What Can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?'\".","authors":"Bridget Pratt, Adrian Harper","doi":"10.1177/15562646221097225","DOIUrl":"10.1177/15562646221097225","url":null,"abstract":"","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 1","pages":"459-460"},"PeriodicalIF":1.3,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43640166","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}

{"title":"Invited Commentary on \"Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?\"","authors":"Michelle R Brear","doi":"10.1177/15562646221097226","DOIUrl":"10.1177/15562646221097226","url":null,"abstract":"<p><p>Bridget Pratt and Adrian Harper ( 2021) conducted a comparison of articles identified through six electronic literature searches. Their aim was to \"identify ethics literature… that discussed combatting neo-colonial models of research\". They used manifest content analysis to compare the conceptual content of articles from the fields of global health (GH) and Australian Aboriginal health (AH). This innovative application of a literature review approach from literary and media studies, to health sciences in which literature reviews have traditionally focused on synthesizing evidence about intervention effectiveness, should be commended. It has potential to advance theoretical understandings of ethics in health research. However, I argue here that Pratt and Harper's (2021) search strategy has several weaknesses, which suggests that their results must be interpreted with caution.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 1","pages":"455-458"},"PeriodicalIF":1.3,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48093079","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}

{"title":"Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda.","authors":"Francis Anyaka Amayoa, Frederick Nelson Nakwagala, John Barugahare, Ian Guyton Munabi, Erisa Sabakaki Mwaka","doi":"10.1177/15562646221100430","DOIUrl":"10.1177/15562646221100430","url":null,"abstract":"<p><p>Several studies have reported inadequate comprehension of informed consent for genomic research. This study aimed to assess research participants' understanding of critical elements of informed consent for genomic research. A cross-sectional survey involving 123 parents/caregivers of children participating in a paediatric genomic TB/HIV study was conducted<b>.</b> Only 47.2% of the participants had adequate understanding of consent information. The mean objective (actual) and subjective (perceived) understanding scores were 78.7% and 91.7% respectively. Participants adequately understood most elements of consent however, some elements were poorly understood including foreseeable risks, protection of confidentiality and compensation for research related injury. Overall there was inadequate comprehension of critical elements of informed consent and there was dissonance between actual and perceived comprehension of informed consent.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 4","pages":"483-493"},"PeriodicalIF":1.7,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9398965/pdf/nihms-1802300.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9701489","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}

{"title":"Capacity Development of Research Ethics Administrators: Scoping Review.","authors":"Mutshidzi A Mulondo, Joyce M Tsoka-Gwegweni, Puleng LenkaBula, Perpetual Chikobvu","doi":"10.1177/15562646221097044","DOIUrl":"10.1177/15562646221097044","url":null,"abstract":"<p><p>Capacity development of research ethics committees is generally limited to members, and seldom includes administrators. This study sought to map the capacity development efforts of research ethics administrators. A scoping review was conducted. The literature search yielded 92 potentially relevant records, and further screening yielded 22 studies. The 22 studies were extracted and synthesized; two studies spoke directly on administrators' capacity development, while the remaining 20 focused on the capacity development of committees or of committee members. The two studies which spoke directly on administrators reported about two capacity development efforts targeting administrators in Africa, namely the African Conference for Administrators of Research Ethics Committees, and the West African Bioethics Training Program.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":"17 1","pages":"515-524"},"PeriodicalIF":1.7,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9403376/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43212621","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}