Pub Date : 2024-06-16DOI: 10.1177/17470161241261466
Martin Hähnel
The problem of dual use is characterized by a wide range of activities or types of research and technology utilization. In this article, I explore the phenomenon of dual use in several steps to make it accessible for ethical inquiries: first, I examine the phenomenon in more detail; is it a genuine property of technologies and methods, a fundamental problem for research ethics, or a specific precondition for trade-off situations? Second, I show that various factors contribute to a certain good becoming a real dual use good. Third, I propose to develop a three-dimensional classification and evaluation system for dual use risks.
{"title":"Conceptualizing dual use: A multidimensional approach","authors":"Martin Hähnel","doi":"10.1177/17470161241261466","DOIUrl":"https://doi.org/10.1177/17470161241261466","url":null,"abstract":"The problem of dual use is characterized by a wide range of activities or types of research and technology utilization. In this article, I explore the phenomenon of dual use in several steps to make it accessible for ethical inquiries: first, I examine the phenomenon in more detail; is it a genuine property of technologies and methods, a fundamental problem for research ethics, or a specific precondition for trade-off situations? Second, I show that various factors contribute to a certain good becoming a real dual use good. Third, I propose to develop a three-dimensional classification and evaluation system for dual use risks.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141335819","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}
Pub Date : 2024-06-10DOI: 10.1177/17470161241261044
Una Jakob, Felicitas Kraemer, Florian Kraus, Thomas Lengauer
With regard to the handling of dual use research, the dominant approach in Germany aimed at mitigating dual use risks emphasizes the freedom of research and the strengthening of academic self-regulation. This article presents this approach as one example for a framework for handling security-relevant research, underlines the need for awareness-raising about risks of security-relevant research, and, more generally, highlights some of the dilemmas researchers and legislators face when dealing with security-relevant research. The article furthermore presents the key questions developed by the German Joint Committee on the Handling of Security-Relevant Research to provide guidance for researchers and institutions when they address possible research of concern. It applies these key questions in a case study of a well-publicized experiment in which artificial intelligence and drug discovery technologies were used to determine their dual use potential in identifying highly toxic chemical substances. Moreover, it discusses the utility of the framework applied in Germany and concludes that this approach is practicable. Given the strong emphasis on the researchers’ own responsibility, however, awareness of dual use risks and risk mitigation strategies should be further enhanced and an academic culture of responsible handling of security-relevant research should be promoted.
{"title":"Applying Ethics in the Handling of Dual Use Research: The Case of Germany","authors":"Una Jakob, Felicitas Kraemer, Florian Kraus, Thomas Lengauer","doi":"10.1177/17470161241261044","DOIUrl":"https://doi.org/10.1177/17470161241261044","url":null,"abstract":"With regard to the handling of dual use research, the dominant approach in Germany aimed at mitigating dual use risks emphasizes the freedom of research and the strengthening of academic self-regulation. This article presents this approach as one example for a framework for handling security-relevant research, underlines the need for awareness-raising about risks of security-relevant research, and, more generally, highlights some of the dilemmas researchers and legislators face when dealing with security-relevant research. The article furthermore presents the key questions developed by the German Joint Committee on the Handling of Security-Relevant Research to provide guidance for researchers and institutions when they address possible research of concern. It applies these key questions in a case study of a well-publicized experiment in which artificial intelligence and drug discovery technologies were used to determine their dual use potential in identifying highly toxic chemical substances. Moreover, it discusses the utility of the framework applied in Germany and concludes that this approach is practicable. Given the strong emphasis on the researchers’ own responsibility, however, awareness of dual use risks and risk mitigation strategies should be further enhanced and an academic culture of responsible handling of security-relevant research should be promoted.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141361304","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}
Pub Date : 2024-06-05DOI: 10.1177/17470161241257575
Veronika Batzdorfer, Wolfgang Zenk-Möltgen, Laura Young, Alexia Katsanidou, Johannes Breuer, Libby Bishop
Balancing speed and quality during crises pose challenges for ensuring the value and utility of data in social science research. The COVID-19 pandemic in particular underscores the need for high-quality data and rapid dissemination. Given the importance of behavioural measures and compliance with measures to contain the pandemic, social science research has played a key role in policymaking during this global crisis. This study addresses two key research questions: How FAIR ( findable, accessible, interoperable and reusable) are social science data on the COVID-19 pandemic? Which study features are related to the level of FAIRness scores of datasets? We assess the FAIRness of n = 1131 articles, retrieved through a keyword search in the Web of Science database, employing both automated and manual coding methods. Our study inclusion criteria encompass empirical studies on the COVID-19 pandemic published between 2019 and 2023 with a social science focus and explicit reference to the underlying dataset(s). Our analysis of n = 45 datasets reveals substantial differences in FAIRness for different types of research on the COVID-19 pandemic. The overall FAIRness of data is acceptable, although particularly Reusability scores fall short, in both the manual and the automatic assessment. Further, articles explicitly linked to the Social Science concept in the OpenAlex database exhibit a higher mean overall FAIRness value. Based on these results, we derive recommendations for balancing ethical obligations and the potential tradeoff between speed and data (sharing) quality in social-scientific crisis research.
{"title":"Between urgency and data quality: assessing the FAIRness of data in social science research on the COVID-19 pandemic","authors":"Veronika Batzdorfer, Wolfgang Zenk-Möltgen, Laura Young, Alexia Katsanidou, Johannes Breuer, Libby Bishop","doi":"10.1177/17470161241257575","DOIUrl":"https://doi.org/10.1177/17470161241257575","url":null,"abstract":"Balancing speed and quality during crises pose challenges for ensuring the value and utility of data in social science research. The COVID-19 pandemic in particular underscores the need for high-quality data and rapid dissemination. Given the importance of behavioural measures and compliance with measures to contain the pandemic, social science research has played a key role in policymaking during this global crisis. This study addresses two key research questions: How FAIR ( findable, accessible, interoperable and reusable) are social science data on the COVID-19 pandemic? Which study features are related to the level of FAIRness scores of datasets? We assess the FAIRness of n = 1131 articles, retrieved through a keyword search in the Web of Science database, employing both automated and manual coding methods. Our study inclusion criteria encompass empirical studies on the COVID-19 pandemic published between 2019 and 2023 with a social science focus and explicit reference to the underlying dataset(s). Our analysis of n = 45 datasets reveals substantial differences in FAIRness for different types of research on the COVID-19 pandemic. The overall FAIRness of data is acceptable, although particularly Reusability scores fall short, in both the manual and the automatic assessment. Further, articles explicitly linked to the Social Science concept in the OpenAlex database exhibit a higher mean overall FAIRness value. Based on these results, we derive recommendations for balancing ethical obligations and the potential tradeoff between speed and data (sharing) quality in social-scientific crisis research.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-06-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141385102","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}
Pub Date : 2024-06-04DOI: 10.1177/17470161241259127
Alice Cavolo, D. Pizzolato
Artificial placentas (APs) are technologies that mimic the human placenta to treat extremely preterm infants. Being an invasive and risky technology, it will raise important ethical questions for human trials. Hence, in this Topic Piece we provide a blueprint of further issues to investigate. First, counselling will have the double role of providing trial information as well as (non) treatment counselling. This requires extra training and the development of ad hoc decision aids to support counselling and parents’ decision-making. Second, more stakeholder involvement is needed. Direct stakeholders, such as parents, clinicians, and researchers, can help develop the decision aids and provide insight on potentially overlooked issues. Society should also be involved to determine whether AP trials and implementation should be subsidized, and the ethical implications of not subsidizing. Third, a proper cost-benefit analysis should be conducted to determine the exact cost of the technology.
人造胎盘（AP）是一种模拟人类胎盘的技术，用于治疗极早产儿。作为一项具有侵入性和风险性的技术，它将为人体试验带来重要的伦理问题。因此，我们在本专题片段中提供了进一步研究问题的蓝图。首先，咨询将具有双重作用，即提供试验信息和（非）治疗咨询。这就需要进行额外的培训，并开发专门的决策辅助工具，为咨询和家长决策提供支持。其次，需要更多利益相关者的参与。直接利益相关者，如家长、临床医生和研究人员，可以帮助开发决策辅助工具，并就可能被忽视的问题提供见解。社会也应参与其中，以确定是否应为 AP 试验和实施提供补贴，以及不提供补贴的伦理影响。第三，应进行适当的成本效益分析，以确定该技术的确切成本。
{"title":"Expanding the ethical debate on human artificial placenta trials","authors":"Alice Cavolo, D. Pizzolato","doi":"10.1177/17470161241259127","DOIUrl":"https://doi.org/10.1177/17470161241259127","url":null,"abstract":"Artificial placentas (APs) are technologies that mimic the human placenta to treat extremely preterm infants. Being an invasive and risky technology, it will raise important ethical questions for human trials. Hence, in this Topic Piece we provide a blueprint of further issues to investigate. First, counselling will have the double role of providing trial information as well as (non) treatment counselling. This requires extra training and the development of ad hoc decision aids to support counselling and parents’ decision-making. Second, more stakeholder involvement is needed. Direct stakeholders, such as parents, clinicians, and researchers, can help develop the decision aids and provide insight on potentially overlooked issues. Society should also be involved to determine whether AP trials and implementation should be subsidized, and the ethical implications of not subsidizing. Third, a proper cost-benefit analysis should be conducted to determine the exact cost of the technology.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-06-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141267574","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}
Pub Date : 2024-05-17DOI: 10.1177/17470161241254169
R. Ravinetto, Joyce Adhiambo, Joshua Kimani
Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not just to build unidirectional trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems.
{"title":"Research ethics preparedness during outbreaks and public health emergencies: Focus on community engagement","authors":"R. Ravinetto, Joyce Adhiambo, Joshua Kimani","doi":"10.1177/17470161241254169","DOIUrl":"https://doi.org/10.1177/17470161241254169","url":null,"abstract":"Research represents an essential component of the response to infectious disease outbreaks and to other public health emergencies, whether they are localised, of international concern, or global. Research conducted in such contexts also comes with particular ethics challenges, the awareness of which has significantly grown following the Ebola outbreak in West Africa, the Zika outbreak in Latin America and the COVID-19 pandemic. These challenges include the need for implementing meaningful community engagement with the researched communities, not just to build unidirectional trust towards the research team, but to achieve a genuine and mutually respectful partnership before, during and after the research. Here, we describe the real-life experience of 10 well-established research clinics in Nairobi, where a successful experience of community engagement linking prevention and care to research was interrupted during the COVID19 pandemic. We contrast this experience with the concept and processes of community engagement as described in selected scientific manuscripts and guidelines, to formulate some conclusions and recommendations. We contend that more action is needed, from research ethics committees and other key-research stakeholders, to align policies and practices with ethics guidance and with evidence-based recommendations from the academic literature, to achieve meaningful community engagement during emergency research, irrespective of the scale and location of an outbreak or public health crisis. Failure to do so, will aggravate the (postcolonial) asymmetries of power in global health and local systems.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-05-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140964299","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}
Pub Date : 2024-05-11DOI: 10.1177/17470161241254052
Mohammad Hosseini, David B Resnik
Journals and publishers are increasingly using artificial intelligence (AI) to screen submissions for potential misconduct, including plagiarism and data or image manipulation. While using AI can enhance the integrity of published manuscripts, it can also increase the risk of false/unsubstantiated allegations. Ambiguities related to journals’ and publishers’ responsibilities concerning fairness and transparency also raise ethical concerns. In this Topic Piece, we offer the following guidance: (1) All cases of suspected misconduct identified by AI tools should be carefully reviewed by humans to verify accuracy and ensure accountability; (2) Journals/publishers that use AI tools to detect misconduct should use only well-tested and reliable tools, remain vigilant concerning forms of misconduct that cannot be detected by these tools, and stay abreast of advancements in technology; (3) Journals/publishers should inform authors about irregularities identified by AI tools and give them a chance to respond before forwarding allegations to their institutions in accordance with Committee on Publication Ethics guidelines; (4) Journals/publishers that use AI tools to detect misconduct should screen all relevant submissions and not just random/purposefully selected submissions; and (5) Journals should inform authors about their definition of misconduct, their use of AI tools to detect misconduct, and their policies and procedures for responding to suspected cases of misconduct.
{"title":"Guidance needed for using artificial intelligence to screen journal submissions for misconduct","authors":"Mohammad Hosseini, David B Resnik","doi":"10.1177/17470161241254052","DOIUrl":"https://doi.org/10.1177/17470161241254052","url":null,"abstract":"Journals and publishers are increasingly using artificial intelligence (AI) to screen submissions for potential misconduct, including plagiarism and data or image manipulation. While using AI can enhance the integrity of published manuscripts, it can also increase the risk of false/unsubstantiated allegations. Ambiguities related to journals’ and publishers’ responsibilities concerning fairness and transparency also raise ethical concerns. In this Topic Piece, we offer the following guidance: (1) All cases of suspected misconduct identified by AI tools should be carefully reviewed by humans to verify accuracy and ensure accountability; (2) Journals/publishers that use AI tools to detect misconduct should use only well-tested and reliable tools, remain vigilant concerning forms of misconduct that cannot be detected by these tools, and stay abreast of advancements in technology; (3) Journals/publishers should inform authors about irregularities identified by AI tools and give them a chance to respond before forwarding allegations to their institutions in accordance with Committee on Publication Ethics guidelines; (4) Journals/publishers that use AI tools to detect misconduct should screen all relevant submissions and not just random/purposefully selected submissions; and (5) Journals should inform authors about their definition of misconduct, their use of AI tools to detect misconduct, and their policies and procedures for responding to suspected cases of misconduct.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-05-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140990057","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}
Pub Date : 2024-05-08DOI: 10.1177/17470161241251591
Leanne Cochrane, Orla Drummond, Eliza Jordan
This article aims to open a discussion on better ethical assurance for non-university research actors drawing on democratic norms. It derives from the author’s experience of a gap in ethical assurance for social science and humanities (SSH) research that takes place outside academia, for example within international organisations, public bodies, non-governmental organisations (NGOs) and by private entities. Many of these actors commission, conduct or sub-contract research activities involving human participants on a regular basis, an activity that often increases during times of crisis where researchers in both the public and private sphere scramble to generate the new knowledge necessary to respond and prevent further harms. The ethical assurance frameworks for such research, while growing, remain limited. Discussion of research conducted by actors outside of university settings and their ethical assurance frameworks are both subjects under-interrogated within the literature. This paper seeks to open that discussion by presenting this broad non-university research context through the frame of research in crisis settings, where the ethical requirements of ‘do no harm’ and the ‘dual imperative’ possess an even heavier significance in research ethics. Furthermore, the global and diverse nature of crisis settings often gives rise to conversations concerning the positioning of the research actor and the need to empower the research participant. This paper presents an early vision of the non-university research actor and ethical assurance process based on the democratic norms of equality and inclusivity.
{"title":"Improving ethical assurance for non-university researchers in crisis settings: an early vision based on democratic norms","authors":"Leanne Cochrane, Orla Drummond, Eliza Jordan","doi":"10.1177/17470161241251591","DOIUrl":"https://doi.org/10.1177/17470161241251591","url":null,"abstract":"This article aims to open a discussion on better ethical assurance for non-university research actors drawing on democratic norms. It derives from the author’s experience of a gap in ethical assurance for social science and humanities (SSH) research that takes place outside academia, for example within international organisations, public bodies, non-governmental organisations (NGOs) and by private entities. Many of these actors commission, conduct or sub-contract research activities involving human participants on a regular basis, an activity that often increases during times of crisis where researchers in both the public and private sphere scramble to generate the new knowledge necessary to respond and prevent further harms. The ethical assurance frameworks for such research, while growing, remain limited. Discussion of research conducted by actors outside of university settings and their ethical assurance frameworks are both subjects under-interrogated within the literature. This paper seeks to open that discussion by presenting this broad non-university research context through the frame of research in crisis settings, where the ethical requirements of ‘do no harm’ and the ‘dual imperative’ possess an even heavier significance in research ethics. Furthermore, the global and diverse nature of crisis settings often gives rise to conversations concerning the positioning of the research actor and the need to empower the research participant. This paper presents an early vision of the non-university research actor and ethical assurance process based on the democratic norms of equality and inclusivity.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141002050","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}
Pub Date : 2024-05-04DOI: 10.1177/17470161241252414
T. Pherali, Sara Bragg, Catherine Borra, Phil Jones
The COVID-19 pandemic posed many ethical and practical challenges for academic research. Some of these have been documented, particularly in relation to health research, but less attention has been paid to the dilemmas encountered by educational and social science research. Given that pandemics are predicted to be more frequent, it is vital to understand how to continue crucial research in schools and other learning communities. This article therefore focuses specifically on research ethics in educational and social science during the pandemic of 2020–2022. The research involved interviews and workshops with University College London (UCL) academics, professional staff and graduate students and encompassed those involved in reviewing ethics applications, researchers dealing with ethics in projects that continued despite disruptions caused by COVID-19, and successful research projects specifically designed to study the effects of COVID-19 in various contexts. The article discusses some of the crucial knowledge and practical experiences that were accumulated. The operational and epistemological lessons learned from this particular institution may have wider relevance to research ethics processes in higher education environments where academics and students are grappling with post-COVID-19 ethical dilemmas and inform broader debates about how research institutions can build institutional knowledge to improve practices of ethics review at the times of health emergencies in future. Our evidence points to the significance of inter- and multidisciplinary, collaborative approaches that flatten institutional hierarchies and to the crucial role played by professional staff. In addition, we argue that ethics review processes must be underpinned by critical debates about wider issues of unequal power relationships between research partners, the nature of knowledge production, ownership and utilisation. To enhance equity and epistemic justice in research practices, ethics education should be an ongoing integral part of research ethics within research institutions.
{"title":"Research ethics in social science research during health pandemics: what can we learn from COVID-19 experiences?","authors":"T. Pherali, Sara Bragg, Catherine Borra, Phil Jones","doi":"10.1177/17470161241252414","DOIUrl":"https://doi.org/10.1177/17470161241252414","url":null,"abstract":"The COVID-19 pandemic posed many ethical and practical challenges for academic research. Some of these have been documented, particularly in relation to health research, but less attention has been paid to the dilemmas encountered by educational and social science research. Given that pandemics are predicted to be more frequent, it is vital to understand how to continue crucial research in schools and other learning communities. This article therefore focuses specifically on research ethics in educational and social science during the pandemic of 2020–2022. The research involved interviews and workshops with University College London (UCL) academics, professional staff and graduate students and encompassed those involved in reviewing ethics applications, researchers dealing with ethics in projects that continued despite disruptions caused by COVID-19, and successful research projects specifically designed to study the effects of COVID-19 in various contexts. The article discusses some of the crucial knowledge and practical experiences that were accumulated. The operational and epistemological lessons learned from this particular institution may have wider relevance to research ethics processes in higher education environments where academics and students are grappling with post-COVID-19 ethical dilemmas and inform broader debates about how research institutions can build institutional knowledge to improve practices of ethics review at the times of health emergencies in future. Our evidence points to the significance of inter- and multidisciplinary, collaborative approaches that flatten institutional hierarchies and to the crucial role played by professional staff. In addition, we argue that ethics review processes must be underpinned by critical debates about wider issues of unequal power relationships between research partners, the nature of knowledge production, ownership and utilisation. To enhance equity and epistemic justice in research practices, ethics education should be an ongoing integral part of research ethics within research institutions.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141013539","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}
Pub Date : 2024-05-04DOI: 10.1177/17470161241250274
Theresa Burgess, Stuart Rennie, K. Moodley
South African research ethics committees (RECs) faced significant challenges during the COVID-19 pandemic. Research ethics committees needed to find a balance between careful consideration of scientific validity and ethical merit of protocols, and review with the urgency normally associated with public health emergency research. We aimed to explore the views of South African RECs on their pandemic preparedness and response during COVID-19. We conducted in-depth interviews with 21 participants from RECs that were actively involved in the review of COVID-19 related research, at seven academic institutions across South Africa. Interviews were conducted remotely using an in-depth interview guide that included questions regarding REC preparedness and response to COVID-19. Interviews were conducted until data saturation, and audio-recordings were transcribed verbatim and coded. An inductive approach to thematic analysis was used to organise data into themes and sub-themes. This study focused on three main themes: coping during COVID-19, building REC capacity during pandemic times and a consistently cautious approach to mutual recognition of REC reviews. Despite an initial sense of unpreparedness, RECs were able to adapt and maintain careful ethical oversight of both COVID and non-COVID research, and the rigour of REC reviews. Several important lessons for preparedness and response to future pandemics were identified, including heightened awareness of publication, funding and political pressures, the importance of regular training for RECs and researchers, and strategies to enhance moral resilience of REC members. Incremental steps are needed to build trust and authentic partnerships among RECs in inter-pandemic times, to facilitate collaboration during future public health emergencies.
{"title":"Exploring views of South African research ethics committees on pandemic preparedness and response during COVID-19","authors":"Theresa Burgess, Stuart Rennie, K. Moodley","doi":"10.1177/17470161241250274","DOIUrl":"https://doi.org/10.1177/17470161241250274","url":null,"abstract":"South African research ethics committees (RECs) faced significant challenges during the COVID-19 pandemic. Research ethics committees needed to find a balance between careful consideration of scientific validity and ethical merit of protocols, and review with the urgency normally associated with public health emergency research. We aimed to explore the views of South African RECs on their pandemic preparedness and response during COVID-19. We conducted in-depth interviews with 21 participants from RECs that were actively involved in the review of COVID-19 related research, at seven academic institutions across South Africa. Interviews were conducted remotely using an in-depth interview guide that included questions regarding REC preparedness and response to COVID-19. Interviews were conducted until data saturation, and audio-recordings were transcribed verbatim and coded. An inductive approach to thematic analysis was used to organise data into themes and sub-themes. This study focused on three main themes: coping during COVID-19, building REC capacity during pandemic times and a consistently cautious approach to mutual recognition of REC reviews. Despite an initial sense of unpreparedness, RECs were able to adapt and maintain careful ethical oversight of both COVID and non-COVID research, and the rigour of REC reviews. Several important lessons for preparedness and response to future pandemics were identified, including heightened awareness of publication, funding and political pressures, the importance of regular training for RECs and researchers, and strategies to enhance moral resilience of REC members. Incremental steps are needed to build trust and authentic partnerships among RECs in inter-pandemic times, to facilitate collaboration during future public health emergencies.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141014404","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}
Pub Date : 2024-03-29DOI: 10.1177/17470161241242135
Maria Cristina Murano
Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.
{"title":"From vulnerable subjects to research partners: a critical policy analysis of biomedical research ethics guidelines and regulations","authors":"Maria Cristina Murano","doi":"10.1177/17470161241242135","DOIUrl":"https://doi.org/10.1177/17470161241242135","url":null,"abstract":"Over the last three quarters of a century, international guidelines and regulations have undergone significant changes in how children are problematised as participants in biomedical research. While early guidelines enacted children as vulnerable subjects with diminished autonomy and in need of special protection, beginning in the early 2000s, international regulatory frameworks defined the paediatric population as vulnerable due to unaddressed public health needs. More recently, ethical recommendations have promoted the active engagement of minors as research partners. In this paper, I adopt a post-structuralist approach to policy analysis to examine deep-seated assumptions and presuppositions underlying the changes in the problematisation of children as biomedical research participants over time. While biomedical research ethics focuses on the autonomy and vulnerability of minors, ethical guidelines are situated in specific sociocultural contexts, shaped, among other things, by contingent public health needs and changing conceptions of the value of research and science for society. In the process, I demonstrate the challenge of moving away from an approach that in taking adults as the model overshadows the complexity of children’s lived experiences as well as their personal, cultural, and social lives. The lack of acknowledgement of this complexity makes children vulnerable to epistemic injustice, which is particularly crucial to address in public involvement initiatives.","PeriodicalId":510000,"journal":{"name":"Research Ethics","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2024-03-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140368280","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}
京公网安备 11010802042870号
京ICP备2023020795号-1
扫码关注我们
求助内容：
应助结果提醒方式：