首页 > 最新文献

Research Ethics最新文献

英文 中文
Editorial: Complaints mechanisms in research: are they fit for purpose? 社论:研究中的投诉机制:它们是否符合目的?
IF 1.7 Q1 Arts and Humanities Pub Date : 2022-09-20 DOI: 10.1177/17470161221127329
K. Chatfield
{"title":"Editorial: Complaints mechanisms in research: are they fit for purpose?","authors":"K. Chatfield","doi":"10.1177/17470161221127329","DOIUrl":"https://doi.org/10.1177/17470161221127329","url":null,"abstract":"","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-09-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72821461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Perceived publication pressure and research misconduct: should we be too bothered with a causal relationship? 感知到的出版压力和研究不端行为:我们应该过于纠结于因果关系吗?
IF 1.7 Q1 Arts and Humanities Pub Date : 2022-09-17 DOI: 10.1177/17470161221125097
N. S. Yeo-Teh, B. Tang
Publication pressure has been touted to promote questionable research practices (QRP) and scientific or research misconduct (RM). However, logically attractively as it is, there is no unequivocal evidence for this notion, and empirical studies have produced conflicting results. Other than difficulties in obtaining unbiased empirical data, a direct causal relationship between perceived publication pressure (PPP) and QRP/RM is inherently difficult to establish, because the former is a complex biopsychosocial construct that is variedly influenced by multiple personal and environmental factors. To effectively address QRP/RM by tackling the sources of PPP would also be difficult because of the competitive nature of the reward and merit system of contemporary science. We might do better with efforts in enhancing knowledge in research ethics and integrity among the practitioners, as well as institutional infrastructures and mechanisms to fairly and efficiently adjudicate cases of QRP/RM.
出版压力被吹捧为促进有问题的研究实践(QRP)和科学或研究不端行为(RM)。然而,尽管逻辑上很吸引人,但这一概念并没有明确的证据,实证研究也产生了相互矛盾的结果。除了难以获得公正的经验数据外,感知出版压力(PPP)与QRP/RM之间的直接因果关系本身就难以建立,因为前者是一个复杂的生物心理社会结构,受到多种个人和环境因素的不同影响。由于当代科学奖励和绩效制度的竞争性,通过解决公私合作关系的来源来有效地解决QRP/RM问题也很困难。我们若能加强研究人员对研究伦理和诚信的认识,以及加强机构基础设施和机制,以公平和有效地裁决QRP/RM个案,可能会做得更好。
{"title":"Perceived publication pressure and research misconduct: should we be too bothered with a causal relationship?","authors":"N. S. Yeo-Teh, B. Tang","doi":"10.1177/17470161221125097","DOIUrl":"https://doi.org/10.1177/17470161221125097","url":null,"abstract":"Publication pressure has been touted to promote questionable research practices (QRP) and scientific or research misconduct (RM). However, logically attractively as it is, there is no unequivocal evidence for this notion, and empirical studies have produced conflicting results. Other than difficulties in obtaining unbiased empirical data, a direct causal relationship between perceived publication pressure (PPP) and QRP/RM is inherently difficult to establish, because the former is a complex biopsychosocial construct that is variedly influenced by multiple personal and environmental factors. To effectively address QRP/RM by tackling the sources of PPP would also be difficult because of the competitive nature of the reward and merit system of contemporary science. We might do better with efforts in enhancing knowledge in research ethics and integrity among the practitioners, as well as institutional infrastructures and mechanisms to fairly and efficiently adjudicate cases of QRP/RM.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86618777","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Principlism and citizen science: the possibilities and limitations of principlism for guiding responsible citizen science conduct 原则主义与公民科学:原则主义指导负责任的公民科学行为的可能性与局限性
IF 1.7 Q1 Arts and Humanities Pub Date : 2022-08-03 DOI: 10.1177/17470161221116558
Patrik Baard, P. Sandin
Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles.
公民科学(CS)作为一种与社会问题和全球挑战相关的新型研究形式被提出。计算机科学将参与者的角色转变为积极参与研究过程的各个阶段,计算机科学项目是动态的,当许多非专业研究人员积极参与研究时,多元化就出现了。一些人认为,这些因素都使现有的研究伦理原则和法规不适合指导负责任的CS行为。然而,尽管许多人试图强调CS的这些挑战,但很少有人讨论为法规提供基础的原则本身。在本文中,我们将探讨中级原则在指导负责任的CS行为中的可能性。原则主义有可能容纳为减少现有原则的相关性而采取的许多关切。
{"title":"Principlism and citizen science: the possibilities and limitations of principlism for guiding responsible citizen science conduct","authors":"Patrik Baard, P. Sandin","doi":"10.1177/17470161221116558","DOIUrl":"https://doi.org/10.1177/17470161221116558","url":null,"abstract":"Citizen science (CS) has been presented as a novel form of research relevant for social concerns and global challenges. CS transforms the roles of participants to being actively involved at various stages of research processes, CS projects are dynamic, and pluralism arises when many non-professional researchers take an active involvement in research. Some argue that these elements all make existing research ethical principles and regulations ill-suited for guiding responsible CS conduct. However, while many have sought to highlight such challenges from CS, few have discussed principles per se providing the foundation for regulations. In this article we will investigate the possibilities of midlevel principlism in guiding responsible CS conduct. Principlism has the potential of accommodating many of the concerns taken to reduce the relevance of existing principles.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89667304","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Ethics review and conversation analysis 伦理审查和对话分析
IF 1.7 Q1 Arts and Humanities 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。
{"title":"Ethics review and conversation analysis","authors":"J. Aguinaldo","doi":"10.1177/17470161221116552","DOIUrl":"https://doi.org/10.1177/17470161221116552","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73699467","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"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","authors":"K. Chatfield, C. Lightbody, Ifikar Qayum, H. Ohly, Marena Ceballos Rasgado, C. Watkins, Nicola M. Lowe","doi":"10.1177/17470161221111059","DOIUrl":"https://doi.org/10.1177/17470161221111059","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89918824","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study.","authors":"Sylvia Nabukenya,&nbsp;Joseph Ochieng,&nbsp;David Kaawa-Mafigiri,&nbsp;Ian Munabi,&nbsp;Janet Nakigudde,&nbsp;Frederick Nelson Nakwagala,&nbsp;John Barugahare,&nbsp;Betty Kwagala,&nbsp;Charles Ibingira,&nbsp;Adelline Twimwijukye,&nbsp;Nelson Sewankambo,&nbsp;Erisa Sabakaki Mwaka","doi":"10.1177/17470161221076974","DOIUrl":"https://doi.org/10.1177/17470161221076974","url":null,"abstract":"<p><p>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.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/0e/45/nihms-1839228.PMC9536131.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9703846","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"The intervening effect of the What Being the Parent of a New Baby is Like-Revised questionnaire on maternal affect","authors":"AH Elise van Beeck, K. Pridham, Yvonne J. Kuipers","doi":"10.1177/17470161221094929","DOIUrl":"https://doi.org/10.1177/17470161221094929","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77278409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"Informed consent in a tuberculosis genetic study in Cameroon: information overload, situational vulnerability and diagnostic misconception","authors":"Ali Ibrahim Mohammed-Ali, E. I. Gebremeskel, E. Yenshu, T. Nji, Apungwa Cornelius Ntabe, S. Wanji, G. Tangwa, N. S. Munung","doi":"10.1177/17470161221106674","DOIUrl":"https://doi.org/10.1177/17470161221106674","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82741137","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"Ethical research landscapes in fragile and conflict-affected contexts: understanding the challenges","authors":"Kelsey Shanks, J. Paulson","doi":"10.1177/17470161221094134","DOIUrl":"https://doi.org/10.1177/17470161221094134","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-04-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79208242","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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 Q1 Arts and Humanities 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。
{"title":"Reporting incidental findings from non-biological assessments in human subject research","authors":"A. Pingitore, Ashley Mack, Justin Zhang, Eric G. Devine, Jackson Doerr, Caroline Denneen","doi":"10.1177/17470161221093877","DOIUrl":"https://doi.org/10.1177/17470161221093877","url":null,"abstract":"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.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72384907","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
期刊
Research Ethics
全部 Acc. Chem. Res. ACS Applied Bio Materials ACS Appl. Electron. Mater. ACS Appl. Energy Mater. ACS Appl. Mater. Interfaces ACS Appl. Nano Mater. ACS Appl. Polym. Mater. ACS BIOMATER-SCI ENG ACS Catal. ACS Cent. Sci. ACS Chem. Biol. ACS Chemical Health & Safety ACS Chem. Neurosci. ACS Comb. Sci. ACS Earth Space Chem. ACS Energy Lett. ACS Infect. Dis. ACS Macro Lett. ACS Mater. Lett. ACS Med. Chem. Lett. ACS Nano ACS Omega ACS Photonics ACS Sens. ACS Sustainable Chem. Eng. ACS Synth. Biol. Anal. Chem. BIOCHEMISTRY-US Bioconjugate Chem. BIOMACROMOLECULES Chem. Res. Toxicol. Chem. Rev. Chem. Mater. CRYST GROWTH DES ENERG FUEL Environ. Sci. Technol. Environ. Sci. Technol. Lett. Eur. J. Inorg. Chem. IND ENG CHEM RES Inorg. Chem. J. Agric. Food. Chem. J. Chem. Eng. Data J. Chem. Educ. J. Chem. Inf. Model. J. Chem. Theory Comput. J. Med. Chem. J. Nat. Prod. J PROTEOME RES J. Am. Chem. Soc. LANGMUIR MACROMOLECULES Mol. Pharmaceutics Nano Lett. Org. Lett. ORG PROCESS RES DEV ORGANOMETALLICS J. Org. Chem. J. Phys. Chem. J. Phys. Chem. A J. Phys. Chem. B J. Phys. Chem. C J. Phys. Chem. Lett. Analyst Anal. Methods Biomater. Sci. Catal. Sci. Technol. Chem. Commun. Chem. Soc. Rev. CHEM EDUC RES PRACT CRYSTENGCOMM Dalton Trans. Energy Environ. Sci. ENVIRON SCI-NANO ENVIRON SCI-PROC IMP ENVIRON SCI-WAT RES Faraday Discuss. Food Funct. Green Chem. Inorg. Chem. Front. Integr. Biol. J. Anal. At. Spectrom. J. Mater. Chem. A J. Mater. Chem. B J. Mater. Chem. C Lab Chip Mater. Chem. Front. Mater. Horiz. MEDCHEMCOMM Metallomics Mol. Biosyst. Mol. Syst. Des. Eng. Nanoscale Nanoscale Horiz. Nat. Prod. Rep. New J. Chem. Org. Biomol. Chem. Org. Chem. Front. PHOTOCH PHOTOBIO SCI PCCP Polym. Chem.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1