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Invited Peer Commentary: Research Site Anonymity in Context. 邀请同行评论:研究地点匿名的背景。
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-12-01 DOI: 10.1177/19401612221138478
Shenuka Singh, Penelope Engel-Hills
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.
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引用次数: 0
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). 为随机对照试验(RCT)招募难以接近的西班牙语人群的文化和情境多媒体方法研究。
IF 1.7 4区 哲学 Q2 ETHICS Pub Date : 2022-10-01 Epub Date: 2022-05-18 DOI: 10.1177/15562646221102682
Larimar Rodriguez, Cristina Murray-Krezan, Lidia Regino, Maria Tellez, Camille Vasquez, Virginia Sandoval, Daniel Perez Rodriguez, Blanca Pedigo, Janet Page-Reeves

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 (N = 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.

涉及随机化的研究设计可能很难与参试者沟通,尤其是那些文化水平较低的参试者。有关解释研究概念的策略的文献十分有限,尤其是针对非英语使用者。我们采用了一种文化和背景多媒体方法来招募 60 名墨西哥女性移民(FMI)参加随机对照试验(RCT),以减少社会隔离和抑郁,并对其效果进行了测评。这一策略旨在解释随机化的概念,说明参与研究需要做些什么,并确保获得知情同意。潜在参与者观看了介绍该研究的演示文稿和一段视频,其中包括解释随机化概念的动画和画外音。我们进行了事前/事后调查。受访者(N = 59)表示,他们对随机化的理解、报名意愿和参与研究的态度都有所提高。我们的结论是,在招募代表性不足、文化水平较低的人群参与 RCT 时,文化和背景多媒体方法是一种有效的模式。
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引用次数: 0
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?'". 作者对“受邀评论‘在健康研究中打击新殖民主义:原住民健康研究伦理和全球健康研究伦理能相互传授什么?’”的回应
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-10-01 Epub Date: 2022-05-03 DOI: 10.1177/15562646221097225
Bridget Pratt, Adrian Harper
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引用次数: 0
Invited Commentary on "Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?" 特邀评论“反对卫生研究中的新殖民主义:土著卫生研究伦理与全球卫生研究伦理可以相互教导什么?”
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-10-01 Epub Date: 2022-04-28 DOI: 10.1177/15562646221097226
Michelle R Brear

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.

Bridget Pratt和Adrian Harper(2021)对通过六次电子文献搜索确定的文章进行了比较。他们的目的是“找出讨论对抗新殖民主义研究模式的伦理学文献”。他们使用清单内容分析来比较全球健康(GH)和澳大利亚土著健康(AH)领域文章的概念内容。这种从文学和媒体研究到健康科学的文献综述方法的创新应用应该受到赞扬,在健康科学中,文献综述传统上侧重于综合有关干预有效性的证据。它有可能促进对卫生研究中伦理学的理论理解。然而,我认为普拉特和哈珀(2021)的搜索策略有几个弱点,这表明他们的结果必须谨慎解释。
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引用次数: 0
Understanding of Critical Elements of Informed Consent in Genomic Research: A Case of a Paediatric HIV-TB Research Project in Uganda. 了解基因组研究中知情同意的关键要素:乌干达儿科艾滋病-结核病研究项目案例。
IF 1.7 4区 哲学 Q2 ETHICS Pub Date : 2022-10-01 Epub Date: 2022-05-12 DOI: 10.1177/15562646221100430
Francis Anyaka Amayoa, Frederick Nelson Nakwagala, John Barugahare, Ian Guyton Munabi, Erisa Sabakaki Mwaka

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. 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.

有几项研究报告称,人们对基因组研究知情同意书的理解不足。本研究旨在评估研究参与者对基因组研究知情同意书关键要素的理解。123名参与儿科结核病/艾滋病毒基因组研究的儿童的父母/监护人接受了横断面调查。只有 47.2% 的参与者充分理解了同意信息。客观(实际)和主观(感知)理解的平均得分分别为 78.7% 和 91.7%。参与者充分理解了同意书的大部分内容,但对一些内容理解不深,包括可预见的风险、保密保护和与研究相关的伤害赔偿。总体而言,参与者对知情同意书的关键要素理解不足,对知情同意书的实际理解与感知理解不一致。
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引用次数: 0
Capacity Development of Research Ethics Administrators: Scoping Review. 研究伦理管理者的能力发展:范围审查
IF 1.7 4区 哲学 Q2 ETHICS Pub Date : 2022-10-01 Epub Date: 2022-04-27 DOI: 10.1177/15562646221097044
Mutshidzi A Mulondo, Joyce M Tsoka-Gwegweni, Puleng LenkaBula, Perpetual Chikobvu

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.

科研伦理委员会的能力建设一般限于委员,很少包括管理人员。本研究试图绘制研究伦理管理人员能力发展工作的地图。进行了范围审查。文献检索产生了92个可能相关的记录,进一步筛选产生了22个研究。提取合成22项研究;两项研究直接谈到行政人员的能力发展,其余20项研究侧重于委员会或委员会成员的能力发展。这两项研究直接谈到了管理人员,报告了针对非洲管理人员的两项能力发展努力,即非洲研究伦理委员会管理人员会议和西非生物伦理培训计划。
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引用次数: 0
Faculty Members' Perceptions and Attitudes Towards Anti-Plagiarism Detection Tools: Applying the Theory of Planned Behavior. 教师对反抄袭检测工具的认知与态度:运用计划行为理论。
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-07-01 DOI: 10.1177/15562646221078655
Rasha M Arabyat, Bashar R Qawasmeh, Sayer I Al-Azzam, Mohammad B Nusair, Karem H Alzoubi

Objective: To evaluate predictors of the use of anti-plagiarism detection tools (APTs) in higher education institutions.

Methods: An online survey based on the theory of planned behavior was sent to members of science faculties in Jordan. Multivariate Logistic regression was conducted to determine predictors of previous use of APTs, and multivariate linear regression to predict future intentions.

Results: A total of 173 faculty members completed the survey, with 78.13% indicating previous APTs use. Turnitin® (43%) and Ithenticate® (32.8%) were the most commonly used APTs. These tools were mainly used to evaluate papers before sending them to journals (65.5%) and to detect plagiarism in theses/dissertations (50.4%). Predictors of previous use were academic rank (p  =  0.02) and perceived understanding of APT use (p  =  0.043). Intentions for future use were predicted by attitudes (p < 0.001) and perceived behavioral control (p  =  0.036).

Conclusion: The theory of planned behavior successfully predicted intentions to use APTs. The use of APTs should be encouraged to all faculty members and students.

目的:探讨高校反抄袭检测工具(APTs)使用的预测因素。方法:以计划行为理论为基础,对约旦的科学院系成员进行在线调查。采用多元逻辑回归确定既往使用APTs的预测因素,并采用多元线性回归预测未来使用意向。结果:共有173名教师完成了调查,78.13%的人表示以前使用过APTs。Turnitin®(43%)和Ithenticate®(32.8%)是最常用的APTs。这些工具主要用于论文投稿前的评估(65.5%)和检测论文/学位论文的抄袭(50.4%)。预测因子为学术等级(p = 0.02)和对APT使用的感知理解(p = 0.043)。结论:计划行为理论成功地预测了apt的使用意向。应该鼓励所有教师和学生使用apt。
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引用次数: 3
Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation. 关于精准医学研究的部落商议:解决民主商议设计和评估中的多样性和不公平问题。
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-07-01 Epub Date: 2022-02-28 DOI: 10.1177/15562646221081267
Erika Blacksher, Susan Brown Trinidad, R Brian Woodbury, Scarlett E Hopkins, Erica L Woodahl, Bert B Boyer, Wylie Burke, Vanessa Hiratsuka

Deliberative democratic engagement is used around the globe to gather informed public input on contentious collective questions. Yet, rarely has it been used to convene individuals exclusively from Indigenous communities. The relative novelty of using this approach to engage tribal communities and concerns about diversity and inequities raise important methodological questions. We describe the design and quality outcomes for a 2.5-day deliberation that elicited views of American Indian and Alaska Native (AIAN) leaders about the potential value and ethical conduct of precision medicine research (PMR), an emerging approach to research that investigates the health effects of individual genetic variation in tandem with variation in health-relevant practices, social determinants, and environmental exposures. The event met key goals, such as relationship and rapport formation, cross-site learning, equality of opportunity to participate, and respect among participants in the context of disagreement.

慎思民主参与在全球各地都被用来收集公众对有争议的集体问题的知情意见。然而,这种方法很少被用来召集专门来自土著社区的个人。使用这种方法让部落社区参与进来相对比较新颖,而且人们对多样性和不平等的关注也提出了重要的方法问题。我们介绍了一次为期 2.5 天的讨论的设计和质量成果,这次讨论征求了美国印第安人和阿拉斯加原住民 (AIAN) 领导人对精准医学研究 (PMR) 的潜在价值和道德行为的看法,PMR 是一种新兴的研究方法,它研究个体基因变异对健康的影响,同时研究与健康相关的实践、社会决定因素和环境暴露的变异。此次活动实现了一些关键目标,如建立关系和默契、跨站点学习、平等参与机会以及在存在分歧的情况下尊重参与者。
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引用次数: 1
Consent Requirements for Testing Health Policies: An Intercontinental Comparison of Expert Opinions. 检测健康政策的同意要求:专家意见的洲际比较
IF 1.7 4区 哲学 Q2 ETHICS Pub Date : 2022-07-01 Epub Date: 2022-02-10 DOI: 10.1177/15562646221076764
Astrid Berner-Rodoreda, Shannon McMahon, Nir Eyal, Puspita Hossain, Atonu Rabbani, Mrittika Barua, Malabika Sarker, Emmy Metta, Elia Mmbaga, Melkizedeck Leshabari, Daniel Wikler, Till Bärnighausen

Individual informed consent is a central requirement for clinical research on human subjects, yet whether and how consent requirements should apply to health policy experiments (HPEs) remains unclear. HPEs test and evaluate public health policies prior to implementation. We interviewed 58 health experts in Tanzania, Bangladesh and Germany on informed consent requirements for HPEs. Health experts across all countries favored a strong evidence base, prior information to the affected populations, and individual consent for 'risky' HPEs. Differences pertained to individual risk perception, how and when consent by group representatives should be obtained and whether HPEs could be treated as health policies. The study adds to representative consent options for HPEs, yet shows that more research is needed in this field - particularly in the present Covid-19 pandemic which has highlighted the need for HPEs nationally and globally.

个人知情同意是人类受试者临床研究的核心要求,但同意要求是否以及如何适用于卫生政策实验仍不清楚。HPE在实施之前测试和评估公共卫生政策。我们采访了坦桑尼亚、孟加拉国和德国的58位卫生专家,了解HPE的知情同意要求。所有国家的卫生专家都支持建立强有力的证据基础,向受影响人群提供事先信息,并对“危险”的高氟氯烃给予个人同意。差异涉及个人风险认知、应如何以及何时获得团体代表的同意,以及是否可以将HPE视为健康政策。该研究增加了HPE的代表性同意选择,但表明该领域需要更多的研究,尤其是在当前新冠肺炎大流行中,这突出了全国和全球对HPE的需求。
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引用次数: 0
Ethical Analysis of Egypt's Law Regulating Clinical Research 埃及规范临床研究的法律伦理分析
IF 1.3 4区 哲学 Q2 ETHICS Pub Date : 2022-05-16 DOI: 10.1177/15562646221096188
A. Matar, H. Silverman
Lately, there has been increased research performed in Egypt. In response, the Egyptian Parliament published its first clinical research law in December 2020. The official version of the law was translated to English from Arabic and back by an accredited translation service. We performed an ethical analysis of the law based on the seven ethical requirements for clinical research proposed by Emanuel et al. and compared it with other regulations in the Arab region. The law contains provisions that fulfill all requirements for ethical research to varying degree. Provisions necessitating the sharing of participants’ data and biospecimens by the Central Intelligence Agency requires further specifications to ensure privacy protection. Also, the law poses problematic liabilities that could hamper medical research. Egypt's law compares favorably with other laws in the region. Potential items that require further specification can be addressed in the executive regulations currently being drafted for the law.
最近,在埃及进行了更多的研究。作为回应,埃及议会于2020年12月公布了首部临床研究法。该法律的官方版本由一家经过认证的翻译机构从阿拉伯语翻译成英语。我们根据Emanuel等人提出的临床研究的七项伦理要求对该法律进行了伦理分析,并将其与阿拉伯地区的其他法规进行了比较。该法律包含的条款在不同程度上满足了伦理研究的所有要求。要求中央情报局共享参与者数据和生物标本的规定需要进一步规范,以确保隐私保护。此外,该法律还提出了可能妨碍医学研究的问题责任。埃及的法律与该地区的其他法律相比较为有利。需要进一步说明的潜在项目可以在目前为该法律起草的行政法规中加以解决。
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引用次数: 1
期刊
Journal of Empirical Research on Human Research Ethics
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