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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
Deception and informed consent in studies with incognito simulated standardized patients: empirical experiences and a case study from South Africa 在模拟匿名标准化患者的研究中的欺骗和知情同意:经验经验和来自南非的案例研究
IF 1.7 Q2 ETHICS Pub Date : 2023-05-22 DOI: 10.1177/17470161231174734
B. Daniels, J. Boffa, A. Kwan, S. Moyo
Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method’s increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of consent and ethical research in international SP studies. Since a foundational discussion of the research ethics of the method was published in 2012, a growing number of studies have implemented this method to collect data on the quality of care in a variety of settings around the world. We draw from that experience to provide empirical foundations for a popular approach to ethical approval of such studies in the United States and Canada, which has been to obtain a waiver of informed consent from the health care providers who are the subjects of the research. However, the majority of studies to date have evaluated quality of care outside the U.S., requiring additional ethical consideration when partnering with international institutions. We discuss these considerations in the context of a case study from a completed SP study in South Africa, where informed consent is constitutionally protected.
模拟标准化患者(SPs)是经过培训的个人,他们伪装成在卫生保健机构寻求治疗的人。随着该方法的使用和普及,我们提出了一些标准,以使该方法适应可行性的背景考虑,并讨论了SP方法的当前问题以及国际SP研究中同意和伦理研究的经验。自2012年发表了关于该方法研究伦理的基础讨论以来,越来越多的研究采用该方法在世界各地的各种环境中收集有关护理质量的数据。我们从这一经验中吸取经验,为美国和加拿大对此类研究的伦理批准的流行方法提供经验基础,该方法是获得作为研究对象的卫生保健提供者的知情同意豁免。然而,到目前为止,大多数研究都评估了美国以外的护理质量,在与国际机构合作时需要额外的伦理考虑。我们在南非完成的一项SP研究的案例研究中讨论了这些考虑因素,在南非,知情同意受到宪法保护。
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引用次数: 1
Systemic disruptions: decolonizing indigenous research ethics using indigenous knowledges 系统性破坏:利用本土知识去殖民化本土研究伦理
IF 1.7 Q2 ETHICS Pub Date : 2023-04-20 DOI: 10.1177/17470161231169205
C. Fournier, S. Stewart, Joshua Adams, Clayton Shirt, Esha Mahabir
Research involving and impacting Indigenous Peoples is often of little or no benefit to the communities involved and, in many cases, causes harm. Ensuring that Indigenous research is not only ethical but also of benefit to the communities involved is a long-standing problem that requires fundamental changes in higher education. To address this necessity for change, the authors of this paper, with the help of graduate and Indigenous community research assistants, undertook community consultation across their university to identify the local and national ethical needs of Indigenous researchers, communities, and Elders. This paper provides an overview of the consultation process, the themes that emerged from the consultations, and a model of the Wholistic Indigenous Research Framework that emerged.
涉及土著人民并对其产生影响的研究往往对有关社区几乎没有或根本没有好处,在许多情况下还造成伤害。确保本土研究不仅符合伦理,而且有利于相关社区,这是一个长期存在的问题,需要对高等教育进行根本改革。为了解决这种改变的必要性,本文的作者在研究生和土著社区研究助理的帮助下,在他们的大学里进行了社区咨询,以确定土著研究人员、社区和长老的地方和国家伦理需求。本文概述了磋商过程、磋商产生的主题以及由此产生的整体土著研究框架模型。
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引用次数: 1
Researchers’ reflections on ethics of care as decolonial research practice: understanding Indigenous knowledge communication systems to navigate moments of ethical tension in rural Malawi 研究人员对护理伦理作为非殖民化研究实践的反思:理解土著知识传播系统,以导航马拉维农村伦理紧张的时刻
IF 1.7 Q2 ETHICS Pub Date : 2023-04-14 DOI: 10.1177/17470161231169484
Mtisunge Isabel Kamlongera, Mkotama W Katenga-Kaunda
This article is autoethnographic, based upon the authors’ experiences and reflections upon encountered moments of ethical tension whilst conducting research in rural Malawi. Given that knowledge production, as a process, has been marred by colonial forms of power, the project was underpinned by efforts to achieve a decolonial approach to the research, including the research ethics. The authors share of their endeavours to counterbalance the challenges of power asymmetries whilst researching and working with an Indigenous community whose reality can be marginalised by the Western canon. The authors attempted to ensure that the values and customs of the researched community were respected and central to the research approach. When researchers are guided by local culture and customs, the participants are able to drive the research approach, incorporate their voice and share knowledge that is true to their context and reality. In this way, the research study is illustrative of how an ethics of care can help to facilitate decolonial research practice.
这篇文章是基于作者在马拉维农村进行研究时遇到的伦理紧张时刻的经历和反思的自我民族志。鉴于知识生产作为一个过程已经被殖民形式的权力所破坏,该项目的基础是努力实现非殖民的研究方法,包括研究伦理。作者分享了他们在研究和与土著社区合作的同时,为平衡权力不对称的挑战所做的努力,土著社区的现实可能被西方经典边缘化。作者试图确保研究群体的价值观和习俗得到尊重,并成为研究方法的核心。当研究人员受到当地文化和习俗的指导时,参与者能够推动研究方法,纳入他们的声音,并分享符合其背景和现实的知识。通过这种方式,这项研究说明了护理伦理如何有助于促进非殖民化研究实践。
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引用次数: 1
Research Responsibility Agreement: a tool to support ethical research 研究责任协议:支持伦理研究的工具
IF 1.7 Q2 ETHICS Pub Date : 2023-04-07 DOI: 10.1177/17470161231166600
M. Murdock, Stephanie Erickson
When engaging in community-based research, it is important to consider ethical research practices throughout the project. While current research practices require many investigators to obtain approval from an ethics review board before starting a project, more is required to ensure that ethical principles are applied once the investigations begin and after the investigations are complete. In response to this concern, as expressed by workers at a feminist non-profit during a community placement, we developed a tool to foster both greater ethical and feminist research practice in community-based research. Using feminist theories, methodologies, and concepts such as epistemic justice, epistemic trust, and coauthorship, a tool was developed to support researchers and other collaborators in building relationships of reciprocity. This tool, called the Research Responsibility Agreement (RRA) invites all members of a research project to explicitly reflect on their role in the research, their relationships with other collaborators, their responsibility to contributing meaningfully in the project, and their plans to remain accountable to one another. In doing so, the RRA adds to existing tools that support ethical research by sharing explicit reflections from all collaborators on how to prevent harm and by asking them to reflect on ethical practices beyond the initial stages of the project. The RRA also encourages greater engagement from researchers and collaborators toward building meaningful relationships with each other, and with participants, to work together in advancing social change. As a practical tool that promotes reflection, that builds relationships, and that holds all parties accountable to ethical and feminist research practices, the RRA has the potential to generate impactful change in community-based research projects and beyond. While the RRA is tailored to community-based research, it can be applied widely to any research project and has the potential to revolutionize how research relationships are built across disciplines.
在从事基于社区的研究时,在整个项目中考虑伦理研究实践是很重要的。虽然目前的研究实践要求许多研究人员在开始一个项目之前获得伦理审查委员会的批准,但在调查开始和调查完成后,需要更多的伦理原则得到应用。作为对这一问题的回应,正如女权主义非营利组织的工作人员在社区实习期间所表达的那样,我们开发了一个工具,以促进社区研究中更大的伦理和女权主义研究实践。利用女权主义理论、方法和概念,如认知正义、认知信任和合著,开发了一个工具来支持研究人员和其他合作者建立互惠关系。这个工具,被称为研究责任协议(RRA),邀请研究项目的所有成员明确地反映他们在研究中的角色,他们与其他合作者的关系,他们在项目中做出有意义贡献的责任,以及他们对彼此负责的计划。通过这样做,RRA增加了现有的支持伦理研究的工具,通过分享所有合作者对如何防止伤害的明确反思,并要求他们在项目的初始阶段之后反思伦理实践。RRA还鼓励研究人员和合作者更多地参与其中,彼此之间以及与参与者之间建立有意义的关系,共同努力推动社会变革。作为一种促进反思、建立关系、使各方对伦理和女权主义研究实践负责的实用工具,RRA有可能在以社区为基础的研究项目及其他领域产生有影响力的变化。虽然RRA是为基于社区的研究量身定制的,但它可以广泛应用于任何研究项目,并有可能彻底改变跨学科研究关系的建立方式。
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引用次数: 1
Cannabis, research ethics, and a duty of care 大麻,研究伦理,和照顾义务
IF 1.7 Q2 ETHICS Pub Date : 2023-04-07 DOI: 10.1177/17470161231164530
J. Wheeldon, J. Heidt
Despite growing evidence to the contrary, researchers continue to posit causal links between cannabis, crime, psychosis, and violence. These spurious connections are rooted in history and fueled decades of structural limitations that shaped how researchers studied cannabis. Until recently, research in this area was explicitly funded to link cannabis use and harm and ignore any potential benefits. Post-prohibition cannabis research has failed to replicate the dire findings of the past. This article outlines how the history of controlling cannabis research has led to various harms, injustices, and ethical complications. We compare commonly cited research from both the prohibition and post-prohibition eras and argue that many popular claims about the dangers of cannabis are the result of ethical lapses by researchers, journals, and funders. We propose researchers in this area adopt a duty of care in cannabis research going forward. This would oblige individual researchers to establish robust research designs, employ careful analytic strategies, and acknowledge limitations in more detail. This duty involves the institutional recognition by funders, journals, and others that cannabis research has been deliberately misconstrued to criminalize, stigmatize, and pathologize.
尽管有越来越多的相反证据,但研究人员仍然认为大麻与犯罪、精神病和暴力之间存在因果关系。这些虚假的联系根植于历史,并助长了几十年来的结构性限制,这些限制影响了研究人员研究大麻的方式。直到最近,这一领域的研究都是明确地将大麻的使用与危害联系起来,而忽略了任何潜在的好处。禁令后的大麻研究未能复制过去的可怕结果。这篇文章概述了控制大麻研究的历史是如何导致各种危害、不公正和伦理并发症的。我们比较了禁酒令时期和后禁酒令时期经常被引用的研究,认为许多关于大麻危害的流行说法是研究人员、期刊和资助者道德失误的结果。我们建议这一领域的研究人员在未来的大麻研究中采取注意义务。这将迫使个别研究人员建立健全的研究设计,采用仔细的分析策略,并在更多细节上承认局限性。这一责任包括资助者、期刊和其他机构认识到大麻研究被故意误解为犯罪、污名化和病态化。
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引用次数: 1
Disclosing and Managing Non-Financial Conflicts of Interest in Scientific Publications. 科学出版物中非财务利益冲突的披露与管理。
IF 1.7 Q2 ETHICS Pub Date : 2023-04-01 DOI: 10.1177/17470161221148387
David B Resnik

In the last decade, there has been increased recognition of the importance of disclosing and managing non-financial conflicts of interests to safeguard the objectivity, integrity, and trustworthiness of scientific research. While funding agencies and academic institutions have had policies for addressing non-financial interests in grant peer review and research oversight since the 1990s, scientific journals have been only recently begun to develop such policies. An impediment to the formulation of effective journal policies is that non-financial interests can be difficult to recognize and define. Journals can overcome this problem by providing guidance concerning the types of non-financial interests that should be disclosed, including direct research interests, direct professional interests, expert testimony, involvement in litigation, holding a leadership position in a non-governmental organization, providing technical or scientific advice to a non-governmental organization, and personal or professional relationships. The guidance should apply to authors, editors, and reviewers.

在过去十年中,人们越来越认识到披露和管理非财务利益冲突对于维护科学研究的客观性、完整性和可信度的重要性。虽然资助机构和学术机构自20世纪90年代以来已经制定了解决资助同行评审和研究监督中的非经济利益的政策,但科学期刊直到最近才开始制定此类政策。制定有效期刊政策的一个障碍是,非财务利益可能难以识别和界定。期刊可以通过提供关于应披露的非经济利益类型的指导来克服这一问题,这些利益包括直接的研究利益、直接的专业利益、专家证词、参与诉讼、在非政府组织担任领导职务、向非政府组织提供技术或科学咨询以及个人或专业关系。该指南应该适用于作者、编辑和审稿人。
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引用次数: 2
期刊
Research Ethics
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