Journal of Empirical Research on Human Research Ethics最新文献

{"title":"Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.","authors":"Jyoti Angal, Barbara Brockevelt, S Jean Caraway, DenYelle B Kenyon, Katherine Ziegler, Amy J Elliott","doi":"10.1177/15562646231173745","DOIUrl":"10.1177/15562646231173745","url":null,"abstract":"<p><p>The last decade has witnessed growing calls for the return of individual research results. Prior work in genetic studies has shown that individual, contextual, and cultural factors influence participants' preferences for individual research results. There is a gap in knowledge about participants' views about other types of results, specifically those lacking clinical significance. This study investigates the perspectives of 1587 mothers enrolled in the Northern Plains Environmental Influences on Child Health Outcomes (ECHO) Program. Participants were presented with hypothetical scenarios to determine their perceived value of individual research results based on result type and the ability to interpret them within a normative context. Irrespective of the result type, participants attributed higher perceived value to results that were well understood than results of unknown significance.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10468824/pdf/nihms-1894090.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10520942","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Jordanian Undergraduate Students' Views of Participation in Clinical Trials: The COVID-19 Example.","authors":"Mamoun Ahram,&nbsp;Rahaf A Al-Qaryouti,&nbsp;Dania S Qarkash,&nbsp;Omar F Salaymeh,&nbsp;Raghad A Shaqqour","doi":"10.1177/15562646221149818","DOIUrl":"https://doi.org/10.1177/15562646221149818","url":null,"abstract":"<p><p>The emergence of the COVID-19 pandemic has necessitated broad public participation in clinical trials. Knowledge of the attitudes of the relatively young would provide a perspective on future representative public enrollment in clinical trials. This study investigated the attitudes of undergraduate university students toward participation in COVID-19 clinical trials and determined the predictors of their attitudes. Using a validated, web-based questionnaire, 61.2% of the 425 respondents had heard about clinical trials before. Web-based media were the main sources of this knowledge. Less than 20% expressed willingness to participate in COVID-19 clinical trials or support the participation of a family member. The predictors were personal and family protection from the disease. On the contrary, being a female, possible political exploitation of the vaccine or drug, and their potential inefficacy were predictors of unwillingness to participate. This study may inform different stakeholders in developing effective study recruitment strategies to combat current and emerging pathogens.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9834000/pdf/10.1177_15562646221149818.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9276841","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Abstracts 2023.","authors":"","doi":"10.1177/15562646221143568","DOIUrl":"10.1177/15562646221143568","url":null,"abstract":"","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9196770","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Informed Consent: Research Staff's Perspectives and Practical Recommendations to Improve Research Staff-Participant Communication.","authors":"Delphine Eeckhout,&nbsp;Karolien Aelbrecht,&nbsp;Catherine Van Der Straeten","doi":"10.1177/15562646221146043","DOIUrl":"https://doi.org/10.1177/15562646221146043","url":null,"abstract":"<p><p>Informed consent (IC) is the process of communication between research staff and potential research participants. However, ensuring that participants clearly understand what research participation entails, raises significant challenges. The aim of this study is to provide insight into some communication barriers that research staff are confronted with and make practical recommendations to improve communication between research staff and participants. A qualitative research study using semi-structured interviews (<i>n</i> = 13) with research staff from Ghent University Hospital was conducted. Data were transcribed verbatim and coded thematically. Our results indicate that communication- and process-related factors affect the IC process. Emergent recommendations include communication training, more interactive information materials and the use of digital alternatives, increasing general knowledge about research participation and patient- and public involvement.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9228952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Variability in Ethics Review for Multicenter Protocols in Buenos Aires, Argentina. An Observational Study.","authors":"Javier Mariani,&nbsp;María Laura Garau,&nbsp;Adriel Jonas Roitman,&nbsp;Claudia Vukotich,&nbsp;Leonardo Perelis,&nbsp;Fernando Ferrero,&nbsp;Adriana Gladys Domínguez,&nbsp;Cecilia Campos,&nbsp;Cecilia Serrano,&nbsp;Gabriel González Villa Monte","doi":"10.1177/15562646221134620","DOIUrl":"https://doi.org/10.1177/15562646221134620","url":null,"abstract":"<p><p>It has been reported that significant variability in the ethics review process affects multisite studies. We analyzed 1,305 applications for multicenter studies (409 unique protocols), from 1^st January 2020 to 20^th September 2021. We examined the variability in the times to approval and the first observation and the variation in the level of risk assigned. The median [IQR] variabilities were 42.19 [15.23-82.36] days and 8.00 [3.12-16.68] days, for the times to approval and to the first observation, respectively. There was disagreement in the level of risk assigned by the Research Ethics Committee (REC) in 24.0% of cases. Independent predictors of variability included the number of REC members. In our study, we found substantial variability in the ethics review process among health research protocols. Also, we describe methods to readily measure the delays and the variations in the ethics review process.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9259783","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation.","authors":"Maddy Slattery,&nbsp;Carolyn Ehrlich,&nbsp;Michael Norwood,&nbsp;Delena Amsters,&nbsp;Gary Allen","doi":"10.1177/15562646221147350","DOIUrl":"https://doi.org/10.1177/15562646221147350","url":null,"abstract":"<p><p>Little is known about why people with disability choose to take part in disability research and what their experience is like. Knowledge of this may help researchers and research ethics committees improve the empowered and ethical participation of people with disability in disability, healthcare, and human service focussed research. This cross-sectional mixed-methods study explored the perspectives and experiences of a group of Australian adults with disability regarding their involvement in research. Online surveys (N = 29) and follow-up interviews (N = 15) were conducted. The study found the decision to participate was a complex appraisal of benefit to self and others, research relevance, value, comfort, convenience, safety and risk. The attitudes and behaviours of researchers in cultivating trust by adopting an empathic approach to the conduct of disability research appear to be an important aspect of participant experience. Research ethics committees may benefit from knowledge of the 'microethical' moments that occur in such research.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9222651","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Protecting the Vulnerable and Including the Under-Represented: IRB Practices and Attitudes.","authors":"Luke Gelinas, David H Strauss, Ying Chen, Hayat R Ahmed, Aaron Kirby, Phoebe Friesen, Barbara E Bierer","doi":"10.1177/15562646221138450","DOIUrl":"10.1177/15562646221138450","url":null,"abstract":"<p><p>Since their inception, Institutional Review Boards (IRBs) have been charged with protecting the vulnerable in research. More recently, attention has turned to whether IRBs also have a role to play in ensuring representative study samples and promoting the inclusion of historically under-represented groups. These two aims-protecting the vulnerable and including the under-represented-can pull in different directions, given the potential for overlap between the vulnerable and the under-represented. We conducted a pilot, online national survey of IRB Chairs to gauge attitudes and practices with regard to protecting the vulnerable and including the under-represented in research. We found that IRBs extend the concept of vulnerability to different groups across various contexts, are confident that they effectively protect vulnerable individuals in research, and believe that IRBs have a role to play in ensuring representative samples and the inclusion of under-represented groups.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10033343/pdf/nihms-1845775.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9228947","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Structural Influences on Consent Decisions in Participatory Health Research in Eswatini.","authors":"Michelle R Brear,&nbsp;Pinky N Shabangu,&nbsp;Karin Hammarberg,&nbsp;Jane Fisher","doi":"10.1177/15562646221147811","DOIUrl":"https://doi.org/10.1177/15562646221147811","url":null,"abstract":"<p><p>Recognition that structural factors influence participation decisions and have potential to coerce participation, emerged relatively recently in research ethics literature. Empirical evidence to elucidate the nature of \"structural\" coercion and influence is needed to optimise respect for autonomy through voluntary informed consent. We present findings from ethnographic data about community co-researchers' experiences designing and implementing demographic and health survey consent procedures in participatory health research in Eswatini. Informed by Bourdieu's sociological theory of multiple types of capital/power, our findings detail structural influences on research participation decisions, highlight the inherently power-laden dynamics of consent interactions, and suggest that to be optimally ethical, research ethics principles and practices should consider and account for structural power dynamics.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9222641","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Research Integrity Attitudes and Behaviors are Difficult to alter: Results from a ten Year Follow-up Study in Norway.","authors":"Bjørn Hofmann,&nbsp;Magne Thoresen,&nbsp;Søren Holm","doi":"10.1177/15562646221150032","DOIUrl":"https://doi.org/10.1177/15562646221150032","url":null,"abstract":"<p><p><i>Background:</i> Research integrity has obtained much attention in research communities, but also in the general public. To improve research integrity is difficult as it involves complex systems of knowledge, attitudes, and practices. The objective of this study is to investigate the knowledge, attitudes, and practices of cohorts of PhD candidates at one faculty (of medicine) over time and compare this to finished PhDs of the same cohorts. <i>Material and method:</i> Researchers (n  =  186) awarded the degree PhD at the Faculty of Medicine at the University of Oslo in 2019 were invited to answer a questionnaire about knowledge, attitudes and actions related to scientific dishonesty. 94 responded (50.5%). The results were compared with results among first-year PhD candidates who responded to the same questionnaire during 2010-20 (n  =  536) and to those who finished PhDs in 2016 (n  =  86). <i>Results:</i> For the years 2010-2020 1.1% of the PhD candidates report to have engaged in severe scientific misconduct (FFP) while 0.9% report to have presented results in a misleading way. 2.3% report that they know of persons at their department who have engaged in FFP the last 12 months. In total 1.5% report to have experienced pressure to engage in severe scientific misconduct (FFP) while 2.1% report to have experienced pressure to present results in a misleading way. On average 12.8% report to have been exposed to unethical pressure concerning inclusion or ordering of authors during the last 12 months, and 28.8% report to have knowledge about their department's written policies about research integrity. While some attitudes improve over the years, attitudes in general are not much changed from 2010-2020. None of the PhDs that received a PhD from the Faculty of Medicine at the University of Oslo in 2019 reported to have engaged in FFT or having experienced pressure to do so.1.1% experienced pressure to present results in other misleading ways, while 26.6% of respondents had experienced unethical pressure in relation to authorship during the course of the PhD fellowship. 4.3% knew about someone at their department who had presented results in a misleading manner. Some attitudes were not in line with traditional conceptions of research integrity, but most agreed that their research environment displayed research integrity. <i>Conclusion:</i> This long-term follow up study shows that few PhD-candidates report to engage in severe scientific misconduct, that they experience little pressure to do so, and with some exceptions, attitudes in in line with good research integrity. However, pressure in relation to authorship is relatively common. There is some improvement in research integrity from PhD candidates to recently finished PhDs, but in general research integrity is stable over time.</p>","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10034472/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9576161","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Book Review: The torture doctors: Human rights crimes and the road to justice","authors":"A. Strode","doi":"10.1177/15562646221140656","DOIUrl":"https://doi.org/10.1177/15562646221140656","url":null,"abstract":"","PeriodicalId":50211,"journal":{"name":"Journal of Empirical Research on Human Research Ethics","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2022-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49662886","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}