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Ethical considerations and dilemmas for the researcher and for families in home-based research: A case for situated ethics 基于家庭的研究中研究者和家庭的伦理考虑和困境:一个情境伦理的案例
IF 1.7 Q2 ETHICS Pub Date : 2023-07-03 DOI: 10.1177/17470161231181860
I. Palaiologou, Alice V. Brown
When researching with or about families in home-based research, there are numerous unexpected ethical issues that can emerge, particularly in qualitative research. This paper is based on reflective accounts of four homed-based research projects, two in the UK and two Australia, which examined ethical dilemmas identified when engaged in home-based research with young children. Using a synergy of ecocultural theory and Foucauldian ideas of Heterotopia as theoretical conceptualisations, the authors employed reflective lenses to guide their approach, and examine dilemmas and complexities when conducting research in the home. We argue that, to address ethical dilemmas, researchers need to problematise and reflect upon the nature of respectful approaches and the ethical implications of their behaviours. We conclude that, although ethical codes are valuable when researching families at home, researchers should plan for and forefront their methodological approaches in ways that are family-centred, whilst also framed by practices that are ethical, respectful and reflective to the situated contexts of family’s ecologies and heterotopias.
在以家庭为基础的研究中,当与家庭一起或关于家庭进行研究时,会出现许多意想不到的伦理问题,特别是在定性研究中。本文基于对四个家庭研究项目的反思,其中两个在英国,两个在澳大利亚,这些项目研究了在与幼儿进行家庭研究时发现的伦理困境。利用生态文化理论和福柯的异托邦思想作为理论概念的协同作用,作者使用反射透镜来指导他们的方法,并在进行家庭研究时检查困境和复杂性。我们认为,为了解决伦理困境,研究人员需要对尊重方法的本质及其行为的伦理含义进行问题化和反思。我们的结论是,尽管伦理准则在家庭研究中是有价值的,但研究人员应该以家庭为中心的方式规划和前沿他们的方法方法,同时也要以伦理、尊重和反思家庭生态和异托邦的情境的实践为框架。
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引用次数: 0
Erratum to “Using wearable cameras to investigate health-related daily life experiences: A literature review of precautions and risks in empirical studies” “使用可穿戴相机调查与健康相关的日常生活体验:实证研究中的预防措施和风险的文献综述”的勘误
IF 1.7 Q2 ETHICS Pub Date : 2023-07-01 DOI: 10.1177/17470161231159486
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Erratum to “Using wearable cameras to investigate health-related daily life experiences: A literature review of precautions and risks in empirical studies”
知识共享非商业性CC BY-NC:本文在知识共享署名-非商业4.0许可(https://creativecommons.org/licenses/by-nc/4.0/)的条款下发布,该许可允许非商业用途,复制和分发作品,无需进一步许可,前提是原始作品的署名与SAGE和开放获取页面(https://us.sagepub.com/en-us/nam/open-access-at-sage)上指定的一致。“使用可穿戴相机调查与健康相关的日常生活体验:实证研究中的预防措施和风险的文献综述”的勘误
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引用次数: 0
Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research 中东北非地区阿拉伯国家研究伦理委员会对涉及生物样本库研究的伦理问题的看法和态度
IF 1.7 Q2 ETHICS Pub Date : 2023-06-29 DOI: 10.1177/17470161231185510
Zeinab Mohammed, F. Abdelgawad, M. Ahram, M. E. Ibrahim, A. Elgamri, Ehsan B. Gamel, L. Adarmouch, K. Rhazi, S. Abd ElHafeez, H. Silverman
Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward these ethical issues. Our findings suggest that efforts are required to better familiarize REC members with the requirements for ethical biobank research. Additionally, we recommend that further research is undertaken with REC members regarding the main items that should be present in the Material Transfer Agreements /Data Transfer Agreements in their corresponding countries and the type of consent that should be used in genomic research.
研究伦理委员会(rec)的成员在审查基因组研究时面临着许多伦理挑战。这些问题包括同意的内容和类型、归还个人研究成果、共享标本和卫生数据的机制以及适当的社区参与努力。本文介绍了一项调查的结果,该调查旨在调查来自中东和北非四个阿拉伯国家(埃及、摩洛哥、苏丹和约旦)的REC成员对这些伦理问题的意见和态度。我们的研究结果表明,需要努力使REC成员更好地熟悉伦理生物库研究的要求。此外,我们建议与REC成员就相应国家的材料转移协议/数据转移协议中应包含的主要项目以及基因组研究中应使用的同意类型进行进一步的研究。
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引用次数: 0
Agreement of farm animal behaviour and welfare studies with the ARRIVE Essential 10 农场动物行为和福利研究与抵达基本10的协议
IF 1.7 Q2 ETHICS Pub Date : 2023-06-29 DOI: 10.1177/17470161231183100
J. Calderón-Amor, Daniela Luna, T. Tadich
The inclusion of animals in research studies involves a great responsibility to ensure animal welfare within the relevant ethical and legal frameworks. This study aimed to review compliance with the ARRIVE Essential 10 requirements and the ethical oversight of animal behaviour and welfare studies in farm animals. Three journals and a total of 133 articles were reviewed for compliance with the ARRIVE Essential 10 items and criteria. Each article obtained a final score according to whether or not each criterion was met within each item. Likewise, ethical declaration in each article was recorded. Chi-square test and linear models were built to assess associations between the ethical statement presentation and the final ARRIVE Essential 10 score with the country, the species, and the journal. We found that 15% of the articles did not present an ethical statement. The journal with the highest impact factor and the countries of the Global South presented an ethical statement more frequently. Regarding the Essential 10, the item with the lowest agreement score was ‘Blinding’ and the one with the highest agreement was ‘Outcome Measures’. Also, significant differences were found between journals in terms of the Essential 10 score. Essential 10 provides relevant information that allows reviewers and readers to identify possible welfare risks and the validity of the results in animal welfare science publications.
将动物纳入研究涉及到在相关伦理和法律框架内确保动物福利的重大责任。本研究旨在审查对reach基本10项要求的遵守情况,以及对农场动物行为和福利研究的道德监督。三份期刊和总共133篇文章被审查是否符合ARRIVE基本的10项和标准。每篇文章根据是否满足每个项目中的每个标准获得最终分数。同样,记录每篇文章的伦理声明。建立了卡方检验和线性模型来评估伦理声明的呈现和最终的ARRIVE Essential 10评分与国家、物种和期刊之间的关系。我们发现15%的文章没有提供伦理声明。影响因子最高的期刊和全球南方国家更频繁地发表道德声明。在Essential 10中,一致性得分最低的是“Blinding”,一致性得分最高的是“Outcome Measures”。此外,不同期刊在Essential 10分方面也存在显著差异。Essential 10提供相关信息,使审稿人和读者能够识别动物福利科学出版物中可能存在的福利风险和结果的有效性。
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引用次数: 0
Ethical standards for research on marine mammals 海洋哺乳动物研究的伦理标准
IF 1.7 Q2 ETHICS Pub Date : 2023-06-22 DOI: 10.1177/17470161231182066
V. Papastavrou, C. Ryan
Conducting marine mammal research can raise several important ethical issues. For example, the continuation of whaling for commercial purposes despite the international moratorium provides opportunities for scientists to obtain data and tissue samples. In 2021 we analysed 35 peer-reviewed papers reporting research based on collaborations with Icelandic whalers. Results highlighted little consideration or understanding of the legal and ethical issues associated with the deliberate killing of whales amongst those researchers, funding bodies, universities and journals involved. Ethical statements were rarely provided. Those that were written were incomplete. Whilst research using whaling data may seem acceptable to some, it often becomes hard to justify when subject to scrutiny by the media and the public. Thus, there is a particular danger of reputational harm for early career researchers who may become unwittingly involved in such activities. Here we also consider the broader variety of ethical issues raised by non-lethal research (both historical and recent) on marine mammals including tagging and biopsy. We discuss instances where study animals were harmed or even killed and where the public mistook tags for harpoons. Without clear guidelines, reviewers and journal editors are put in an impossible position when considering whether to reject papers on ethical grounds. We propose that for such studies, universities, funders, journals, and permit issuers must require ethical assessments and that journals more effectively implement their existing policies on publishing ethical statements. The professional marine mammal societies need to work together to produce modern ethical guidance. Such guidance should require transparency in the provenance of data and samples while including advice on law, welfare issues, involvement of local scientists, and offshoring. Furthermore, it should require appraisal of and justification for the absolute necessity of invasive procedures. As is already the case in biomedical disciplines, ethical statements should be required in marine mammal science.
进行海洋哺乳动物研究可能会引发几个重要的伦理问题。例如,尽管国际禁止捕鲸,但出于商业目的的捕鲸仍在继续,这为科学家获取数据和组织样本提供了机会。2021年,我们分析了35篇同行评议的论文,这些论文报告了基于与冰岛捕鲸者合作的研究。研究结果表明,研究人员、资助机构、大学和期刊对与故意捕杀鲸鱼相关的法律和伦理问题缺乏考虑或理解。很少提供道德声明。所写的是不完整的。虽然使用捕鲸数据的研究似乎对某些人来说是可以接受的,但在受到媒体和公众的审查时,往往很难证明其合理性。因此,对于那些可能在不知不觉中卷入此类活动的早期职业研究人员来说,存在声誉受损的特别危险。在这里,我们还考虑了由海洋哺乳动物的非致命性研究(包括历史和最近的)引起的更广泛的伦理问题,包括标记和活检。我们讨论了研究动物受到伤害甚至被杀死的例子,以及公众将标签误认为鱼叉的例子。如果没有明确的指导方针,审稿人和期刊编辑在考虑是否以伦理理由拒绝论文时就会陷入两难境地。我们建议,对于此类研究,大学、资助者、期刊和许可证发行人必须要求进行伦理评估,并且期刊必须更有效地执行其发表伦理声明的现有政策。专业海洋哺乳动物协会需要共同努力,制定现代伦理指导。这种指导应要求数据和样本的来源具有透明度,同时包括关于法律、福利问题、当地科学家的参与和离岸外包的建议。此外,它应该要求评估和证明侵入性手术的绝对必要性。正如在生物医学学科中已经出现的情况一样,在海洋哺乳动物科学中应该要求伦理声明。
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引用次数: 1
Let’s do better: Improving research ethics knowledge, practice and systems of oversight 做得更好:完善科研伦理知识、实践和监管体系
IF 1.7 Q2 ETHICS Pub Date : 2023-06-22 DOI: 10.1177/17470161231183840
E. Dove, K. Chatfield
Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Let’s do better: Improving research ethics knowledge, practice and systems of oversight
知识共享非商业性CC BY-NC:本文在知识共享署名-非商业4.0许可(https://creativecommons.org/licenses/by-nc/4.0/)的条款下发布,该许可允许非商业用途,复制和分发作品,无需进一步许可,前提是原始作品的署名与SAGE和开放获取页面(https://us.sagepub.com/en-us/nam/open-access-at-sage)上指定的一致。做得更好:完善科研伦理知识、实践和监管体系
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引用次数: 0
Who owns your consent? How REBs give away participants’ agency 谁拥有你的同意?reb如何放弃参与者的代理权
IF 1.7 Q2 ETHICS Pub Date : 2023-06-14 DOI: 10.1177/17470161231180829
Janice Aurini, V. Iafolla
We draw on three illustrative vignettes to examine how REBs manage participants’ agency in the context of qualitative research. We ask: Who owns a participant’s consent? Central to informed consent is the principle of Respect for Persons, which privileges the autonomy of individuals to make decisions about what happens (or not) to them. Yet, REBs sometimes require researchers to get permission from organizations to conduct research on their current and former members, even when the research is not about those organizations. Our aim is to raise awareness about the inherent contradictions of this practice and to consider guidelines for determining the appropriateness of involving organizations that may be tangentially connected to the research objectives or potential participants.
我们利用三个说明性的小插曲来研究reb如何在定性研究的背景下管理参与者的代理。我们问:谁拥有参与者的同意?知情同意的核心是尊重人的原则,这一原则赋予个人自主决定发生(或不发生)什么的权利。然而,reb有时要求研究人员获得组织的许可才能对其现任和前任成员进行研究,即使这项研究与这些组织无关。我们的目的是提高人们对这一实践的内在矛盾的认识,并考虑确定涉及可能与研究目标或潜在参与者有切线联系的组织的适当性的指导方针。
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引用次数: 0
Reshaping consent so we might improve participant choice (II) – helping people decide 重塑同意,这样我们就可以改善参与者的选择(二)——帮助人们做决定
IF 1.7 Q2 ETHICS Pub Date : 2023-06-12 DOI: 10.1177/17470161231176932
H. Davies, Rosie Munday, Maeve O’Reilly, Catriona Gilmour Hamilton, Arzhang Ardahan, S. Kolstoe, K. Gillies
Research consent processes must provide potential participants with the necessary information to help them decide if they wish to join a study. On the Oxford ‘A’ Research Ethics Committee we’ve found that current research proposals mostly provide adequate detail (even if not in an easily comprehensible format), but often fail to support decision making, a view supported by published evidence. In a previous paper, we described how consent might be structured, and here we develop the concept of an Information and Decision Aid (IDA) that can support decision making and be used to guide the dialogue between researcher and potential participant. Our proposal requires limited changes to current processes or paperwork and would provide an easily accessible document for others that the potential participant might approach for advice. It could later be integrated with the Informed Consent Form to ensure all matters of concern to the individual participant have been addressed before consent is formally signed off.
研究同意过程必须向潜在参与者提供必要的信息,以帮助他们决定是否希望加入研究。在牛津大学“A”级研究伦理委员会上,我们发现目前的研究提案大多提供了足够的细节(即使不是以一种容易理解的形式),但往往无法支持决策,这一观点得到了公开证据的支持。在之前的一篇论文中,我们描述了如何构建同意,在这里我们提出了信息和决策援助(IDA)的概念,它可以支持决策,并用于指导研究人员和潜在参与者之间的对话。我们的提案需要对当前流程或文书工作进行有限的修改,并将为其他潜在参与者提供易于访问的文件,以便他们可以向其寻求建议。之后,它可以与知情同意书整合在一起,以确保在正式签署同意书之前,所有与个人参与者有关的问题都得到了解决。
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引用次数: 0
Research ethics committee members’ perspectives on paediatric research: a qualitative interview study 研究伦理委员会成员对儿科研究的看法:一项定性访谈研究
IF 1.7 Q2 ETHICS Pub Date : 2023-06-12 DOI: 10.1177/17470161231179663
Kajsa Norberg Wieslander, A. Höglund, Sara Frygner-Holm, T. Godskesen
Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.
研究伦理委员会在保护儿童参与研究方面发挥着至关重要的作用。然而,关于REC成员对儿科研究的看法的研究很少。我们进行了一项定性研究,以探讨瑞典科学REC成员在涉及严重健康状况儿童的应用程序中的伦理方面的观点。委员会成员认为促进参与、保护儿童和遵守规管是中心方面。结果强调了不忽视患病儿童获得适当信息和参与的权利的重要性。REC成员支持一种情境和整体的脆弱性和风险方法,该方法考虑了儿童和父母的心理健康以及儿童的短期和长期完整性。儿科研究的伦理复杂性要求在RECs内持续发展伦理能力。
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引用次数: 0
Afterlife: the post-research affect and effect of software 来世:软件的后研究影响和效果
IF 1.7 Q2 ETHICS Pub Date : 2023-06-10 DOI: 10.1177/17470161231178450
Nicolas E. Gold, Ian Lawson, N. Oxtoby
Software plays an important role in contemporary research. Aside from its use for administering traditional instruments like surveys and in data analysis, the widespread use of mobile and web apps for social, medical and lifestyle engagement has led to software becoming a research intervention in its own right. For example, it is not unusual to find apps being studied for their utility as interventions in health and social life. Since the software may persist in use beyond the life of an investigation, this raises questions as to the extent of ethical duties for researchers involved in its production and/or study towards the participants involved. Key factors identified include the extent of affect created by the software, the effect it has on a participant’s life, the length of investigation, cost of maintenance and participant agency. In this article we discuss the issues raised in such situations, considering them in the context of post-research duties of care and suggesting strategies to balance the burden on researchers with the need for ongoing participant support.
软件在当代研究中扮演着重要的角色。除了用于管理调查和数据分析等传统工具外,移动和网络应用程序在社交、医疗和生活方式方面的广泛使用,已使软件成为一种独立的研究干预手段。例如,研究应用程序作为健康和社会生活干预手段的效用并不罕见。由于该软件可能会在调查结束后继续使用,这就提出了有关参与其生产和/或研究的研究人员对所涉及的参与者的道德责任程度的问题。确定的关键因素包括软件产生的影响程度,它对参与者生命的影响,调查的长度,维护成本和参与者的代理。在本文中,我们讨论了在这种情况下提出的问题,在研究后护理职责的背景下考虑它们,并提出了平衡研究人员负担与持续参与者支持需求的策略。
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引用次数: 0
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Research Ethics
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