Journal of Empirical Research on Human Research Ethics最新文献

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.

Introduction: Engaging youth living with HIV (YLWH) in research is critical to improving HIV-related outcomes, but their involvement raises unaddressed bioethical questions. Methods: This study used qualitative inquiry with Kenyan YLWH, caregivers, and subject matter experts (SMEs) to evaluate ethical considerations and strategies for research involving YLWH. Results: Interviews were conducted with 99 participants: 40 YLWH (median age 17.5, 50% female), 20 caregivers (70% female), and 39 SMEs (44% female). All participant groups discussed the need for HIV disclosure status assessment, confidentiality, and engagement of caregivers. Youth participants discussed the importance of clear protocol explanations and developing good rapport. All participant groups perceived youth under 18 to be harder to recruit due to a number of identified barriers. Clinic settings were the most acceptable place for recruitment. Conclusion: Participants provided perspectives on engaging YLWH in research that can be incorporated into protocols and regulatory guidelines.

Little is known about whether people living with HIV would like to receive their results from pharmacogenomics research. This study explored the factors influencing participants' preferences and the reasons for their desire to receive individual results from pharmacogenomics research. We employed a convergent parallel mixed methods study design comprising a survey of 225 research participants and 5 deliberative focus group discussions with 30 purposively selected research participants. Almost all (98%) participants wanted to receive individual pharmacogenomics research results. Reasons for the desire to receive results were reciprocity for valuable time and effort, preparing for future eventualities, and the right to information about their health. Overall, participants desire to receive feedback from pharmacogenomics research, particularly if results are well established and clinically actionable.

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.