Research EthicsPub Date : 2023-06-29DOI: 10.1177/17470161231185510
Zeinab Mohammed, F. Abdelgawad, M. Ahram, M. E. Ibrahim, A. Elgamri, Ehsan B. Gamel, L. Adarmouch, K. Rhazi, S. Abd ElHafeez, H. Silverman
{"title":"Opinions and attitudes of research ethics committees in Arab countries in the Middle East and North African region toward ethical issues involving biobank research","authors":"Zeinab Mohammed, F. Abdelgawad, M. Ahram, M. E. Ibrahim, A. Elgamri, Ehsan B. Gamel, L. Adarmouch, K. Rhazi, S. Abd ElHafeez, H. Silverman","doi":"10.1177/17470161231185510","DOIUrl":"https://doi.org/10.1177/17470161231185510","url":null,"abstract":"Members of research ethics committees (RECs) face a number of ethical challenges when reviewing genomic research. These include issues regarding the content and type of consent, the return of individual research results, mechanisms of sharing specimens and health data, and appropriate community engagement efforts. This article presents the findings from a survey that sought to investigate the opinions and attitudes of REC members from four Arab countries in the Middle East and North Africa (Egypt, Morocco, Sudan, and Jordan) toward these ethical issues. Our findings suggest that efforts are required to better familiarize REC members with the requirements for ethical biobank research. Additionally, we recommend that further research is undertaken with REC members regarding the main items that should be present in the Material Transfer Agreements /Data Transfer Agreements in their corresponding countries and the type of consent that should be used in genomic research.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"126 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89932080","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}
Research EthicsPub Date : 2023-06-29DOI: 10.1177/17470161231183100
J. Calderón-Amor, Daniela Luna, T. Tadich
{"title":"Agreement of farm animal behaviour and welfare studies with the ARRIVE Essential 10","authors":"J. Calderón-Amor, Daniela Luna, T. Tadich","doi":"10.1177/17470161231183100","DOIUrl":"https://doi.org/10.1177/17470161231183100","url":null,"abstract":"The inclusion of animals in research studies involves a great responsibility to ensure animal welfare within the relevant ethical and legal frameworks. This study aimed to review compliance with the ARRIVE Essential 10 requirements and the ethical oversight of animal behaviour and welfare studies in farm animals. Three journals and a total of 133 articles were reviewed for compliance with the ARRIVE Essential 10 items and criteria. Each article obtained a final score according to whether or not each criterion was met within each item. Likewise, ethical declaration in each article was recorded. Chi-square test and linear models were built to assess associations between the ethical statement presentation and the final ARRIVE Essential 10 score with the country, the species, and the journal. We found that 15% of the articles did not present an ethical statement. The journal with the highest impact factor and the countries of the Global South presented an ethical statement more frequently. Regarding the Essential 10, the item with the lowest agreement score was ‘Blinding’ and the one with the highest agreement was ‘Outcome Measures’. Also, significant differences were found between journals in terms of the Essential 10 score. Essential 10 provides relevant information that allows reviewers and readers to identify possible welfare risks and the validity of the results in animal welfare science publications.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"31 1","pages":"373 - 389"},"PeriodicalIF":1.7,"publicationDate":"2023-06-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"74741590","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}
Research EthicsPub Date : 2023-06-22DOI: 10.1177/17470161231182066
V. Papastavrou, C. Ryan
{"title":"Ethical standards for research on marine mammals","authors":"V. Papastavrou, C. Ryan","doi":"10.1177/17470161231182066","DOIUrl":"https://doi.org/10.1177/17470161231182066","url":null,"abstract":"Conducting marine mammal research can raise several important ethical issues. For example, the continuation of whaling for commercial purposes despite the international moratorium provides opportunities for scientists to obtain data and tissue samples. In 2021 we analysed 35 peer-reviewed papers reporting research based on collaborations with Icelandic whalers. Results highlighted little consideration or understanding of the legal and ethical issues associated with the deliberate killing of whales amongst those researchers, funding bodies, universities and journals involved. Ethical statements were rarely provided. Those that were written were incomplete. Whilst research using whaling data may seem acceptable to some, it often becomes hard to justify when subject to scrutiny by the media and the public. Thus, there is a particular danger of reputational harm for early career researchers who may become unwittingly involved in such activities. Here we also consider the broader variety of ethical issues raised by non-lethal research (both historical and recent) on marine mammals including tagging and biopsy. We discuss instances where study animals were harmed or even killed and where the public mistook tags for harpoons. Without clear guidelines, reviewers and journal editors are put in an impossible position when considering whether to reject papers on ethical grounds. We propose that for such studies, universities, funders, journals, and permit issuers must require ethical assessments and that journals more effectively implement their existing policies on publishing ethical statements. The professional marine mammal societies need to work together to produce modern ethical guidance. Such guidance should require transparency in the provenance of data and samples while including advice on law, welfare issues, involvement of local scientists, and offshoring. Furthermore, it should require appraisal of and justification for the absolute necessity of invasive procedures. As is already the case in biomedical disciplines, ethical statements should be required in marine mammal science.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"18 1","pages":"390 - 408"},"PeriodicalIF":1.7,"publicationDate":"2023-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84899526","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}
Research EthicsPub Date : 2023-06-22DOI: 10.1177/17470161231183840
E. Dove, K. Chatfield
{"title":"Let’s do better: Improving research ethics knowledge, practice and systems of oversight","authors":"E. Dove, K. Chatfield","doi":"10.1177/17470161231183840","DOIUrl":"https://doi.org/10.1177/17470161231183840","url":null,"abstract":"Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Let’s do better: Improving research ethics knowledge, practice and systems of oversight","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"11 1","pages":"227 - 230"},"PeriodicalIF":1.7,"publicationDate":"2023-06-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"81861583","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}
Research EthicsPub Date : 2023-06-14DOI: 10.1177/17470161231180829
Janice Aurini, V. Iafolla
{"title":"Who owns your consent? How REBs give away participants’ agency","authors":"Janice Aurini, V. Iafolla","doi":"10.1177/17470161231180829","DOIUrl":"https://doi.org/10.1177/17470161231180829","url":null,"abstract":"We draw on three illustrative vignettes to examine how REBs manage participants’ agency in the context of qualitative research. We ask: Who owns a participant’s consent? Central to informed consent is the principle of Respect for Persons, which privileges the autonomy of individuals to make decisions about what happens (or not) to them. Yet, REBs sometimes require researchers to get permission from organizations to conduct research on their current and former members, even when the research is not about those organizations. Our aim is to raise awareness about the inherent contradictions of this practice and to consider guidelines for determining the appropriateness of involving organizations that may be tangentially connected to the research objectives or potential participants.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"33 7-8 1","pages":"474 - 493"},"PeriodicalIF":1.7,"publicationDate":"2023-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77649507","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}
Research EthicsPub Date : 2023-06-12DOI: 10.1177/17470161231176932
H. Davies, Rosie Munday, Maeve O’Reilly, Catriona Gilmour Hamilton, Arzhang Ardahan, S. Kolstoe, K. Gillies
{"title":"Reshaping consent so we might improve participant choice (II) – helping people decide","authors":"H. Davies, Rosie Munday, Maeve O’Reilly, Catriona Gilmour Hamilton, Arzhang Ardahan, S. Kolstoe, K. Gillies","doi":"10.1177/17470161231176932","DOIUrl":"https://doi.org/10.1177/17470161231176932","url":null,"abstract":"Research consent processes must provide potential participants with the necessary information to help them decide if they wish to join a study. On the Oxford ‘A’ Research Ethics Committee we’ve found that current research proposals mostly provide adequate detail (even if not in an easily comprehensible format), but often fail to support decision making, a view supported by published evidence. In a previous paper, we described how consent might be structured, and here we develop the concept of an Information and Decision Aid (IDA) that can support decision making and be used to guide the dialogue between researcher and potential participant. Our proposal requires limited changes to current processes or paperwork and would provide an easily accessible document for others that the potential participant might approach for advice. It could later be integrated with the Informed Consent Form to ensure all matters of concern to the individual participant have been addressed before consent is formally signed off.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"1 1","pages":"466 - 473"},"PeriodicalIF":1.7,"publicationDate":"2023-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76708557","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}
Research EthicsPub Date : 2023-06-12DOI: 10.1177/17470161231179663
Kajsa Norberg Wieslander, A. Höglund, Sara Frygner-Holm, T. Godskesen
{"title":"Research ethics committee members’ perspectives on paediatric research: a qualitative interview study","authors":"Kajsa Norberg Wieslander, A. Höglund, Sara Frygner-Holm, T. Godskesen","doi":"10.1177/17470161231179663","DOIUrl":"https://doi.org/10.1177/17470161231179663","url":null,"abstract":"Research ethics committees (RECs) have a crucial role in protecting children in research. However, studies on REC members’ perspectives on paediatric research are scarce. We conducted a qualitative study to explore Swedish scientific REC members’ perspectives on ethical aspects in applications involving children with severe health conditions. The REC members considered promoting participation, protecting children and regulatory adherence to be central aspects. The results underscored the importance of not neglecting ill children’s rights to adapted information and participation. REC members supported a contextual and holistic approach to vulnerability and risk, which considers the child’s and parents’ psychological wellbeing and the child’s integrity, both short and long term. The ethical complexity of paediatric research requires continuous ethical competence development within RECs.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"156 1","pages":"494 - 518"},"PeriodicalIF":1.7,"publicationDate":"2023-06-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79891442","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}
Research EthicsPub Date : 2023-06-10DOI: 10.1177/17470161231178450
Nicolas E. Gold, Ian Lawson, N. Oxtoby
{"title":"Afterlife: the post-research affect and effect of software","authors":"Nicolas E. Gold, Ian Lawson, N. Oxtoby","doi":"10.1177/17470161231178450","DOIUrl":"https://doi.org/10.1177/17470161231178450","url":null,"abstract":"Software plays an important role in contemporary research. Aside from its use for administering traditional instruments like surveys and in data analysis, the widespread use of mobile and web apps for social, medical and lifestyle engagement has led to software becoming a research intervention in its own right. For example, it is not unusual to find apps being studied for their utility as interventions in health and social life. Since the software may persist in use beyond the life of an investigation, this raises questions as to the extent of ethical duties for researchers involved in its production and/or study towards the participants involved. Key factors identified include the extent of affect created by the software, the effect it has on a participant’s life, the length of investigation, cost of maintenance and participant agency. In this article we discuss the issues raised in such situations, considering them in the context of post-research duties of care and suggesting strategies to balance the burden on researchers with the need for ongoing participant support.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"17 1","pages":"433 - 448"},"PeriodicalIF":1.7,"publicationDate":"2023-06-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78222218","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}
Research EthicsPub Date : 2023-05-22DOI: 10.1177/17470161231174734
B. Daniels, J. Boffa, A. Kwan, S. Moyo
{"title":"Deception and informed consent in studies with incognito simulated standardized patients: empirical experiences and a case study from South Africa","authors":"B. Daniels, J. Boffa, A. Kwan, S. Moyo","doi":"10.1177/17470161231174734","DOIUrl":"https://doi.org/10.1177/17470161231174734","url":null,"abstract":"Simulated standardized patients (SPs) are trained individuals who pose incognito as people seeking treatment in a health care setting. With the method’s increasing use and popularity, we propose some standards to adapt the method to contextual considerations of feasibility, and we discuss current issues with the SP method and the experience of consent and ethical research in international SP studies. Since a foundational discussion of the research ethics of the method was published in 2012, a growing number of studies have implemented this method to collect data on the quality of care in a variety of settings around the world. We draw from that experience to provide empirical foundations for a popular approach to ethical approval of such studies in the United States and Canada, which has been to obtain a waiver of informed consent from the health care providers who are the subjects of the research. However, the majority of studies to date have evaluated quality of care outside the U.S., requiring additional ethical consideration when partnering with international institutions. We discuss these considerations in the context of a case study from a completed SP study in South Africa, where informed consent is constitutionally protected.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"177 1","pages":"341 - 359"},"PeriodicalIF":1.7,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"74943045","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}
Research EthicsPub Date : 2023-04-20DOI: 10.1177/17470161231169205
C. Fournier, S. Stewart, Joshua Adams, Clayton Shirt, Esha Mahabir
{"title":"Systemic disruptions: decolonizing indigenous research ethics using indigenous knowledges","authors":"C. Fournier, S. Stewart, Joshua Adams, Clayton Shirt, Esha Mahabir","doi":"10.1177/17470161231169205","DOIUrl":"https://doi.org/10.1177/17470161231169205","url":null,"abstract":"Research involving and impacting Indigenous Peoples is often of little or no benefit to the communities involved and, in many cases, causes harm. Ensuring that Indigenous research is not only ethical but also of benefit to the communities involved is a long-standing problem that requires fundamental changes in higher education. To address this necessity for change, the authors of this paper, with the help of graduate and Indigenous community research assistants, undertook community consultation across their university to identify the local and national ethical needs of Indigenous researchers, communities, and Elders. This paper provides an overview of the consultation process, the themes that emerged from the consultations, and a model of the Wholistic Indigenous Research Framework that emerged.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"17 1","pages":"325 - 340"},"PeriodicalIF":1.7,"publicationDate":"2023-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88027013","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}