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Ethics review and conversation analysis 伦理审查和对话分析
IF 1.7 Q2 ETHICS Pub Date : 2022-08-02 DOI: 10.1177/17470161221116552
J. Aguinaldo
In this case study, I address the procedural ethics of conversation analysis (CA) and the collection of naturally occurring mundane interactions. I draw from the challenges that emerged from the institutional ethics review of the HIV, health and interaction study (the H2I Study), a CA project that sought to identify the practices through which normative assumptions of HIV and other health conditions are produced in conversations. Consistent with CA’s preference for naturally occurring interactions, the H2I Study collected and analysed everyday telephone calls involving people living with HIV. This article offers practical strategies CA researchers might use to navigate two ethical concerns raised about the collection of naturally occurring mundane interactions. The first questions the merits of collecting naturally occurring mundane interactions. For those unfamiliar with CA, the specific advantages of analysing naturally occurring mundane interactions may not be self-evident. This places an evidentiary burden on CA researchers to warrant the collection of this type of data. To address this concern, I suggest demonstrating in ethics applications the analytic value of CA using publicly available interactions. The second concern questions the use of verbal consent necessary for the collection of naturally occurring mundane interactions. Like most CA research, the H2I Study required flexible informed consent protocols appropriate for spontaneous and unpredictable interactions. Drawing from within and outside the CA literature, I offer three rationales for the use of verbal consent. This article is written as a practical resource for conversation analysts seeking approval from their research ethics board (REB) and for REBs who might be unfamiliar with CA research. This article contributes to a small but growing body of literature that documents not only the kinds of challenges CA researchers encounter from institutional ethics review, but the specific procedural ethics they may employ to secure ethics approval.
在这个案例研究中,我讨论了对话分析(CA)的程序伦理和自然发生的日常交互的集合。我从艾滋病毒、健康和相互作用研究(H2I研究)的机构伦理审查中出现的挑战中得出结论,这是一个CA项目,旨在确定在对话中产生关于艾滋病毒和其他健康状况的规范性假设的做法。与CA对自然发生的相互作用的偏好一致,H2I研究收集并分析了涉及艾滋病毒感染者的日常电话。本文提供了CA研究人员可能使用的实用策略,以解决关于自然发生的日常交互的收集所引起的两个伦理问题。第一个问题是收集自然发生的日常互动的优点。对于那些不熟悉CA的人来说,分析自然发生的日常交互的特定优势可能不是不言而喻的。这给CA研究人员提供了证据负担,以保证收集这类数据。为了解决这个问题,我建议在伦理应用程序中使用公开可用的交互来展示CA的分析价值。第二个问题是对收集自然发生的世俗互动所必需的口头同意的使用。与大多数CA研究一样,H2I研究需要灵活的知情同意协议,适用于自发和不可预测的相互作用。从CA文献的内部和外部,我提供了三个使用口头同意的理由。本文是为寻求研究伦理委员会(REB)批准的对话分析师以及可能不熟悉CA研究的REB编写的实用资源。这篇文章为一个小而不断增长的文献体做出了贡献,这些文献不仅记录了CA研究人员在机构伦理审查中遇到的各种挑战,而且记录了他们可能采用的特定程序伦理,以确保伦理批准。
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引用次数: 1
Can an ethics code help to achieve equity in international research collaborations? Implementing the global code of conduct for research in resource-poor settings in India and Pakistan 道德规范能否帮助实现国际研究合作的公平?在印度和巴基斯坦实施资源贫乏环境下的全球研究行为准则
IF 1.7 Q2 ETHICS Pub Date : 2022-07-07 DOI: 10.1177/17470161221111059
K. Chatfield, C. Lightbody, Ifikar Qayum, H. Ohly, Marena Ceballos Rasgado, C. Watkins, Nicola M. Lowe
The Global Code of Conduct for Research in Resource-Poor Settings (GCC) aims to stop the export of unethical research practices from higher to lower income settings. Launched in 2018, the GCC was immediately adopted by European Commission funding streams for application in research that is situated in lower and lower-middle income countries. Other institutions soon followed suit. This article reports on the application of the GCC in two of the first UK-funded projects to implement this new code, one situated in India and one in Pakistan. Through systematic ethics evaluation of both projects, the practical application of the GCC in real-world environments was tested. The findings of this ethics evaluation suggest that while there are challenges for implementation, application of the GCC can promote equity in international research collaborations.
《全球资源贫乏国家研究行为准则》(GCC)旨在阻止从较高收入国家向较低收入国家出口不道德的研究做法。GCC于2018年启动,立即被欧盟委员会的资金流采用,用于低收入和中低收入国家的研究。其他机构很快也纷纷效仿。本文报告了GCC在英国资助的两个实施新法规的项目中的应用,一个位于印度,一个位于巴基斯坦。通过对这两个项目进行系统的伦理评估,测试了GCC在现实环境中的实际应用。这项伦理评估的结果表明,尽管在实施方面存在挑战,但GCC的应用可以促进国际研究合作的公平性。
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引用次数: 1
Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study. 主要研究小组成员在艾滋病毒感染者药物遗传学研究中获得知情同意的经验和做法:一项定性研究。
IF 1.7 Q2 ETHICS Pub Date : 2022-07-01 DOI: 10.1177/17470161221076974
Sylvia Nabukenya, Joseph Ochieng, David Kaawa-Mafigiri, Ian Munabi, Janet Nakigudde, Frederick Nelson Nakwagala, John Barugahare, Betty Kwagala, Charles Ibingira, Adelline Twimwijukye, Nelson Sewankambo, Erisa Sabakaki Mwaka

This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants' understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.

本研究旨在探讨主要研究团队成员在药物遗传学研究中获得知情同意的经验和做法,并确定在知情同意过程中加强理解的方法。数据收集涉及对主要研究人员进行15次定性深入访谈,这些研究人员参与了获得乌干达艾滋病毒感染者知情同意参加药物遗传临床试验的工作。该研究探讨了两个突出的主题:用于传达信息和增强研究参与者理解的方法以及在同意过程中面临的挑战。确定了获得同意的若干障碍和促进因素。本研究确定了创新和潜在有效的同意策略,应该进行研究和独立验证。
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引用次数: 4
The intervening effect of the What Being the Parent of a New Baby is Like-Revised questionnaire on maternal affect “新生儿的父母是什么样的”-修订问卷对母亲情感的干预作用
IF 1.7 Q2 ETHICS Pub Date : 2022-07-01 DOI: 10.1177/17470161221094929
AH Elise van Beeck, K. Pridham, Yvonne J. Kuipers
The ‘What Being the Parent of a New Baby is Like-Revised’ (WPL-R) is an instrument designed to measure adaptation to parenthood. In the process of pilot testing and validating the WPL-R in a postpartum Dutch population, we became aware of the potentially sensitive nature of the measure. Despite the ethics committee waiving the invasive nature of the measure, we conducted a survey to explore its possible effect on women’s thoughts and emotions by using the Positive And Negative Affect Schedule (PANAS) to measure changes associated with completion of the WPL-R. Two hundred and fifteen questionnaires were returned. Our findings indicated a change in PANAS scores, implying an intervening effect when using the WPL-R, in research. This raises the question of whether it is acceptable to use a questionnaire with postpartum women without any knowledge of the possible effect it may have, even though the ethics committee has approved the study and considers the measure to be non-invasive.
“新生儿的父母是什么样的-修订”(WPL-R)是一个旨在衡量父母适应的工具。在荷兰产后人群中进行试点测试和验证WPL-R的过程中,我们意识到该措施的潜在敏感性。尽管伦理委员会放弃了测量的侵入性,但我们通过使用积极和消极影响量表(PANAS)来测量与完成wpls - r相关的变化,进行了一项调查,以探讨其对女性思想和情绪的可能影响。共回收了215份问卷。我们的研究结果表明,PANAS评分发生了变化,这意味着在研究中使用WPL-R时存在干预效应。这就提出了一个问题,即使伦理委员会已经批准了这项研究,并认为这项措施是非侵入性的,但在不知道可能产生的影响的情况下,对产后妇女使用问卷调查是否可以接受。
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引用次数: 1
Informed consent in a tuberculosis genetic study in Cameroon: information overload, situational vulnerability and diagnostic misconception 喀麦隆结核病遗传研究中的知情同意:信息超载、情境脆弱性和诊断误解
IF 1.7 Q2 ETHICS Pub Date : 2022-06-14 DOI: 10.1177/17470161221106674
Ali Ibrahim Mohammed-Ali, E. I. Gebremeskel, E. Yenshu, T. Nji, Apungwa Cornelius Ntabe, S. Wanji, G. Tangwa, N. S. Munung
Concerns around comprehension and recall of consent information by research participants have typically been associated with low health and research literacy levels. In genomics research, this concern is heightened as the scientific and ethical complexities of genetics research, such as biobanking, genetic susceptibility, data sharing, and incidental findings may be more difficult for potential research participants to understand. However, challenges to research participants’ comprehension of consent information may be compounded by factors beyond health and research literacy levels. To identify factors that may impact research participants’ understanding and recall of consent information, we designed a qualitative study to explore whether participants enrolled in a tuberculosis genetics study (TBGEN-Africa) in Cameroon understood the objectives of the study, the risks and benefits and certain key aspects of the study such as biobanking and data sharing. The results showed that research participants had limited understanding and/or recall of the TBGEN-Africa study goals and methods. Some participants were of the opinion that TBGEN-Africa was not a genetics study because tuberculosis is not an inheritable condition. Factors that may have hindered understanding and/or recall of study information are diagnostic misconception (research participants consider research as part of medical diagnosis), and information overload and situational vulnerability (consent at a time of physical and emotional distress). There is a need for improved practices to support research participants’ understanding of consent information in genetics studies including designing the consent process in ways that minimize psychological distress and diagnostic/therapeutic misconception.
研究参与者对理解和回忆同意信息的担忧通常与较低的健康和研究素养水平有关。在基因组学研究中,由于遗传学研究的科学和伦理复杂性(如生物银行、遗传易感性、数据共享和偶然发现)可能使潜在的研究参与者更难以理解,这种担忧得到了加强。然而,健康和研究素养水平以外的因素可能使研究参与者对同意信息的理解面临的挑战更加复杂。为了确定可能影响研究参与者对同意信息的理解和回忆的因素,我们设计了一项定性研究,以探讨参加喀麦隆结核病遗传学研究(TBGEN-Africa)的参与者是否了解研究的目标、风险和收益以及研究的某些关键方面,如生物银行和数据共享。结果显示,研究参与者对TBGEN-Africa研究目标和方法的理解和/或回忆有限。一些与会者认为TBGEN-Africa不是一项遗传学研究,因为结核病不是一种可遗传的疾病。可能阻碍理解和/或回忆研究信息的因素是诊断误解(研究参与者将研究视为医学诊断的一部分)、信息过载和情境脆弱性(在身体和情感痛苦时同意)。有必要改进实践,以支持研究参与者对遗传学研究中同意信息的理解,包括以尽量减少心理痛苦和诊断/治疗误解的方式设计同意过程。
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引用次数: 2
Ethical research landscapes in fragile and conflict-affected contexts: understanding the challenges 脆弱和受冲突影响背景下的伦理研究景观:理解挑战
IF 1.7 Q2 ETHICS Pub Date : 2022-04-30 DOI: 10.1177/17470161221094134
Kelsey Shanks, J. Paulson
As the prevalence of conflict and fragility continue to rise around the world, research is increasingly heralded as a solution. However, current ethical guidelines for working in areas suffering from institutional and social fragility, insecurity or violent conflict have been heavily critiqued as highly abstract; focussed only on data collection; detached from the realities of academia in the Global South; and potentially extractive. This article seeks to respond to that assessment by spotlighting some of the most prevalent challenges researchers face in the pursuit of ethical working practices. It explores the material and epistemic injustices that often shape and underpin research structures and relationships in these contexts. The paper draws on the authors’ experiences of research in conflict-affected and fragile contexts over the last fifteen years and on workshop discussions with researchers based in fragile and conflict-affected contexts conducted in Amman, Bogotá and Dhaka in 2019-2020. The paper works from the premise that achieving ethical research in fragile spaces is not dependent solely on activity at the site of research, but also on decisions made across the entire ecosystem of a research project. It therefore interrogates the full research landscape, from funding models, to research design (including research topics, partnerships, methods, participant selection, and researcher positionality), to dissemination plans and ethical gatekeeping. The paper critically reflects on inequities in the processes of knowledge production about conflict and fragility and the key ethical challenges that researchers encounter. It highlights the need for further guidance, support and accountability to ensure ethical research practices.
随着冲突和脆弱性在世界范围内的普遍存在,研究越来越被视为一种解决方案。然而,目前在体制和社会脆弱、不安全或暴力冲突地区工作的道德准则被严厉批评为高度抽象;只注重数据收集的;与南半球学术界的现实脱节;而且可能是采掘的。本文试图通过强调研究人员在追求道德工作实践中面临的一些最普遍的挑战来回应这一评估。它探讨了在这些背景下经常塑造和巩固研究结构和关系的物质和认识上的不公正。本文借鉴了作者过去15年来在受冲突影响和脆弱环境下的研究经验,以及2019-2020年在安曼、波哥大和达卡与脆弱和受冲突影响环境下的研究人员进行的研讨会讨论。这篇论文的前提是,在脆弱的空间中实现伦理研究不仅取决于研究地点的活动,还取决于研究项目的整个生态系统所做的决定。因此,它审视了整个研究领域,从资助模式到研究设计(包括研究主题、伙伴关系、方法、参与者选择和研究人员定位),再到传播计划和道德把关。本文批判性地反思了关于冲突和脆弱性的知识生产过程中的不平等以及研究人员遇到的关键伦理挑战。它强调需要进一步的指导、支持和问责制,以确保合乎道德的研究实践。
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引用次数: 5
Reporting incidental findings from non-biological assessments in human subject research 报告人类受试者研究中非生物学评估的偶然发现
IF 1.7 Q2 ETHICS Pub Date : 2022-04-18 DOI: 10.1177/17470161221093877
A. Pingitore, Ashley Mack, Justin Zhang, Eric G. Devine, Jackson Doerr, Caroline Denneen
Incidental findings in research with human participants may have implications for a person’s present health or future health outcomes. Current guidelines focus on methods for handling and reporting incidental findings from biological test data but incidental findings might also arise from non-biological tests. This article presents three examples in which the results from non-biological test data can be predictive of future disease and should be disclosed to research participants. It is intended to increase awareness and facilitate further discussion about the reporting of incidental findings from non-biological data.
在人类参与者的研究中偶然发现可能对一个人目前的健康或未来的健康结果产生影响。目前的指南侧重于处理和报告生物试验数据附带发现的方法,但非生物试验也可能产生附带发现。这篇文章提出了三个例子,其中非生物测试数据的结果可以预测未来的疾病,应该向研究参与者披露。其目的是提高对非生物学数据附带发现报告的认识并促进进一步讨论。
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引用次数: 0
Ethical considerations in social media analytics in the context of migration: lessons learned from a Horizon 2020 project 移民背景下社交媒体分析中的伦理考虑:从地平线2020项目中吸取的经验教训
IF 1.7 Q2 ETHICS Pub Date : 2022-03-16 DOI: 10.1177/17470161221087542
Jamie Mahoney, Kahina Le Louvier, S. Lawson, Diotima Bertel, E. Ambrosetti
The ubiquitous use of social platforms across the globe makes them attractive options for investigating social phenomena including migration. However, the use of social media data raises several crucial ethical issues around the areas of informed consent, anonymity and profiling of individuals, which are particularly sensitive when looking at a population such as migrants, which is often considered as ‘vulnerable’. In this paper, we discuss how the opportunities and challenges related to social media research in the context of migration impact on the development of large-scale scientific projects. Building on the EU-funded research project PERCEPTIONS, we explore the concrete challenges experienced in such projects regarding profiling, informed consent, bias, data sharing and ethical approval procedures, as well as the strategies used to mitigate them. We draw from lessons learned in this project to discuss implications and recommendations to researchers, funders and university ethics review panels. This paper contributes to the growing discussion on the ethical challenges associated with big social data research projects on migration by highlighting concrete aspects stakeholders should be looking for and questioning when involved in such large-scale scientific projects where collaboration, data sharing and transformation and practicalities are of importance.
社交平台在全球范围内的普遍使用使其成为调查包括移民在内的社会现象的有吸引力的选择。然而,社交媒体数据的使用引发了几个关键的道德问题,涉及知情同意、匿名和个人画像等领域,这些问题在关注移民等通常被认为是“弱势群体”的人群时尤为敏感。在本文中,我们讨论了移民背景下与社交媒体研究相关的机遇和挑战如何影响大型科学项目的发展。在欧盟资助的研究项目PERCEPTIONS的基础上,我们探讨了这些项目在分析、知情同意、偏见、数据共享和伦理审批程序方面遇到的具体挑战,以及用于减轻这些挑战的策略。我们从这个项目中吸取教训,讨论对研究人员、资助者和大学伦理审查小组的影响和建议。本文通过强调利益相关者在参与此类大型科学项目时应该寻找和质疑的具体方面,为与移民大社会数据研究项目相关的伦理挑战的日益增长的讨论做出了贡献,其中协作,数据共享和转换以及实用性非常重要。
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引用次数: 9
Ethical issues in multilingual research situations: a focus on interview-based research 多语言研究情境中的伦理问题:以访谈为基础的研究
IF 1.7 Q2 ETHICS Pub Date : 2022-03-16 DOI: 10.1177/17470161221085857
Natalie Schembri, Alma Jahić Jašić
Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 (first language) as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were conducted with five European researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data.
在多语言情境下,基于访谈的研究可能会给研究人员带来与基于语言的权力游戏、数据处理和呈现相关的特定伦理挑战。研究表明,首选L1(第一语言)作为采访语言可能会产生更高质量的数据,但外部压力可能有利于英语作为主要的研究语言。本文考察了研究者对语言选择的伦理后果和所涉及的实际问题的看法和经验。采访是由五名欧洲研究人员进行的,他们从事一个基于访谈的项目,具有不同访谈场景的经验。本文以尊重自主、正义、仁慈和非恶意这四项道德原则为分析框架。该分析揭示了在以母语和英语为导向的情况下,道德问题的微妙图景。这包括前者潜在的数据失实和非文化化,以及后者基于语言的权力不对称。研究结果强调了记录语言使用中与伦理相关的方法学细节的重要性,并倡导有利于纳入和突出母语数据的出版实践。
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引用次数: 6
Reporting and discoverability of “Tweets” quoted in published scholarship: current practice and ethical implications 发表学术论文中引用的“tweet”的报道和可发现性:当前实践和伦理含义
IF 1.7 Q2 ETHICS Pub Date : 2022-02-03 DOI: 10.1177/17470161221076948
S. Mason, Lenandlar Singh
Twitter is an increasingly common source of rich, personalized qualitative data, as millions of people daily share their thoughts on myriad topics. However, questions remain unclear concerning if and how to quote publicly available social media data ethically. In this study, focusing on 136 education manuscripts quoting 2667 Tweets, we look to investigate the ways in which Tweets are quoted, the ethical discussions forwarded and actions taken, and the extent to which quoted Tweets are “discoverable.” A concerning result is that in almost all manuscripts, and for around half of all quoted Tweets, the original author could be identified. Drawing on our findings we share some ethical dilemmas, including those that arise from an apparent lack of understanding of the technical aspects of the platform, and offer suggestions for promoting ethically-informed practice.
Twitter是一个越来越普遍的丰富、个性化的定性数据来源,数百万人每天都在Twitter上分享他们对无数话题的看法。然而,关于是否以及如何合乎道德地引用公开可用的社交媒体数据的问题仍不清楚。在这项研究中,我们关注的是引用2667条推文的136篇教育手稿,我们希望调查推文被引用的方式,转发的道德讨论和采取的行动,以及被引用的推文在多大程度上是“可发现的”。一个令人担忧的结果是,在几乎所有的手稿中,以及大约一半被引用的推文中,原作者都可以被识别出来。根据我们的研究结果,我们分享了一些道德困境,包括那些因明显缺乏对平台技术方面的理解而产生的困境,并为促进道德知情的实践提供了建议。
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引用次数: 8
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Research Ethics
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