Journal of Empirical Research on Human Research Ethics最新文献

The issue of publishing ethics has been drawing attention from scholars of various fields, and this study focuses on the situation in translation and interpreting (T&I) studies. It surveys Chinese T&I researchers' publication pressure and its impact on their research quality and publishing ethics via an online questionnaire and follow-up telephone interviews. Altogether, 124 respondents filled out the questionnaire, and 14 of them took part in the interviews. Data analyses reveal that the pressure caused by the limited number of T&I journals is the highest, there is significant correlation between this type of pressure and publishing ethics, and there is also significant association between publication pressure and research quality. The follow-up interviews confirmed the findings, and the discussions with interviewees suggest that using alternative evaluation methods such as the representative work method might be a way out of the current publishing dilemma.

According to the Swedish Ethics Review Act, research involving personal data on crimes should undergo independent ethics review. To explore the reporting of ethics approval, we extracted information from articles with Swedish personal data on crimes published in 2013-2021. Of the identified 298 articles, 92 (31%) failed to report ethics approval. Failures were particularly common in articles with a qualitative design, single or few authors and when there was a social science focus. Failures varied markedly between universities. We conclude that failures to report compulsory ethics approval are common in articles involving personal data on crime and that these failures vary markedly with the research setting. Several indicators of poor adherence to the Ethics Review Act have been identified.

Numerous ethical, legal, and social issues arise with biological sample sharing. The study explored the perspectives of genetic and genomic researchers on the sharing of biological samples in international collaborative research. Qualitative in-depth interviews were conducted with 15 researchers. Participants expressed positive attitudes towards biobanking and appreciated the benefits of cross-border sharing of biological samples but noted that this practice had adversely affected local capacity building efforts. There was limited understanding of the ethical and regulatory frameworks governing sample sharing. Researchers emphasized the importance of respecting cultural values in biobanking research. Issues concerning poor governance and inequitable benefit sharing were also raised. There is a need for fair and equitable international collaborations where all researchers are treated with respect and as equal partners.

The study aimed to examine whether the use of words related to different moral foundations can predict the perceived severity of research misconduct. We gave two groups of participants, undergraduate medical students, the same hypothetical scenarios of research misconduct cases containing words related to different aspects of morality, and asked them to assess how inappropriate the described behavior was. Students ranked the described behaviors differently by the inappropriateness of the behavior, but the group wording was not a significant predictor of appropriateness. The reasons for the ranking were not related to any standardized procedures for research integrity but were related to the moral assessment of the students, which was assessed using qualitative approach. The results of this study implicate that personal moral views are an important part in research integrity training.

Informed consent and debriefing of research participants in studies that use deception are ethical safeguards for which existing scholarly work on their implementation remains variable and insufficiently clear. A systematic review of research ethics guidelines was conducted to sketch a picture of whether, why and how informed consent and debriefing are recommended when using deception. Documents roughly agreed on several general principles, but varied significantly in the specifics of why and whether these safeguards are necessary, in which conditions and how they should be implemented. Various aspects that appear in the literature could not be found in the guidelines. In our review, guidance was integrated and showed a variation of implementation strategies that could help in contextualizing these safeguards.

Institutional Research Ethics Committees (RECs) play crucial roles in the impartial and competent review of scientific research, particularly during public health emergencies. In this report, we examined their ability and capacity to provide this basic service during public health emergencies and non-emergency situations. Our qualitative documentary analysis revealed that there are currently no legal regulations guiding the activities of Kyrgyz RECs during public health emergencies. In addition, major policy gaps exist in how RECs should operate in non-emergency circumstances. This lack of guidance highlights the urgent need to develop and implement ethical guidelines to meet the evolving needs of such emergencies. Our findings underscore the growing urgency of supporting capacity building of RECs to respond effectively to future pandemics and other public health crises.

Timely communication from Research Ethics Committees (REC) to researchers is essential to meet deadlines. We conducted a capacity building program for REC members, REC and research administrators, and researchers from seven RECs in Uganda in order to improve the research regulatory approval cycle. The training was delivered from March 2020 to July 2021. Trainees were evaluated using pre and post-training tests. There was an increase in the average score from 38% to 53% in pre and post-training test respectively for the personal effectiveness and leadership programme for REC and research administrators. There was an increase in the average score of from 53.9% to 70.1% in pre and post-training test respectively for training on emerging and complex study designs. We achieved shift in knowledge and skills in use of the National Research Information Management System. We recommend regular training of REC members and administrators for efficient review of research protocols.

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.

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.

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.