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Background: The impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews., Methods: We conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees' statements that were regarded as typical or representative., Results: The respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL., Conclusions: The findings from the focus group studies shed light on researchers' barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization., Competing Interests: Declarations Ethical approval and consent to participate This investigation was reviewed and approved by the Health Science Center of Peking University IRB (No IRB00001052-19013). To safeguard the privacy of the respondents, we proactively requested them to mask any identifying characteristics that could potentially lead to recognition. Moreover, all respondents provided informed consent, having received comprehensive written and oral information about the project. This information included details about the objectives and topics of the focus group interviews, the confidentiality measures in place to protect their data, the storage and use of the data for scientific papers and presentations, as well as the option to withdraw from the study at any point without providing a specific reason. Throughout the transcription process, careful consideration was given to protecting the identities of individuals, institutions, and locations involved in the study. Names were changed, and any information that posed a risk of identifying individuals was handled with utmost caution. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: The COVID-19 pandemic posed many unprecedented challenges to health care systems and public health efforts worldwide. Policy making and science were deeply intertwined, in particular with regard to the justification of health policy measures. In this context, ethical considerations were often at the core of decision-making trade-offs. However, not much is known about the actual ethical challenges encountered by policy makers and scientists involved in policy advice. With this study, we therefore aim to explore the ethical challenges during COVID-19-related political decision-making in Switzerland as perceived by policy makers and scientists involved in policy making. We also explore the role ethics advice had during the pandemic response and what can be learned for future public health crises., Methods: We conducted thirteen qualitative expert interviews with policy makers and scientists involved in decision-making on COVID-19 policy responses in Switzerland on the regional and national level. We used inductive content analysis to analyse the interviews., Results: Among the multitude of ethical challenges highlighted, interviewees perceived making trade-offs between the common good vs. the individual good and between economic welfare vs. health of the population, as well as proportionality of the policy measures, and the capacity of the public to accept uncertainty as central. Interviewees had diverging opinions on whether ethical considerations were sufficiently raised and discussed on the Swiss policy level during the COVID-19 pandemic. Among the reasons why ethics was not sufficiently discussed, they mentioned a lack of time in the fast-paced dynamic of the pandemic, ethics as a complex subject area, the interconnectedness between ethics and law, too much focus on few topics (mostly on vaccination-related ethical questions), and power relationships, such as dominance of medical professionals over ethicists. They evaluated ethics support to have been adequately present in the decision-making process, but wished for ethics training, involvement of the public in the discourse and for accompanying communication to build trust among the population for the future., Conclusions: The study provides empirical insights into the ethical considerations of COVID-19 policy making in practice in Switzerland. It can help to develop ethics assistance for future crises and inform ethical health policy and decision-making not only in Switzerland, but also in other countries., Competing Interests: Declarations Ethics approval and consent to participate The interview study complies with the Declaration of Helsinki and was reviewed and approved by the ETH Zurich Ethics Commission on January 19th 2022 (EK 2022-N-04). The invitation letter informed participants about the aims and procedures of the interview study, as well as their rights: It highlighted that they have the choice whether to participate in the study or not, that they have the right to withdraw at any time without specifying reasons and without any consequences. It emphasized that the interviews will be transcribed in a de-identified manner, stored safely in an encrypted form and reported in an anonymous way. Only the responsible investigators will have access to the original interview transcript under strictly observed rules of confidentiality. De-identified quotations of the interview might be used for scientific publications or conference presentations. Lastly, interviewees were informed that by participating in the interview, they give their informed consent for participation. In the beginning of the interviews, any open questions were addressed, and the interviewees’ verbal consent was obtained for recording the interview. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

The COVID-19 pandemic forced Principal Investigators (PIs) to make rapid and unprecedented decisions about ongoing research projects and research teams. Confronted with vague or shifting guidance from institutional administrators and public health officials, PIs nonetheless had to decide whether their projects were "essential," who could conduct on-site "essential" research, how to continue research activities by remote means if possible, and how to safely and effectively manage personnel during the crisis. Based on both narrative comments from a federally sponsored survey of over a thousand NIH- and NSF-funded PIs and their personnel, as well as follow-up interviews with over 60 survey participants, this study examines various ways PI and institutional decisions raised issues of procedural and distributive fairness. These fairness issues include the challenge of treating research personnel fairly in light of their disparate personal circumstances and inconsistent enforcement of COVID-19-related directives. Our findings highlight aspects of fairness and equitability that all PIs and research administrators should keep in mind for when future research disruptions occur.

Scientists who manage research laboratories often face ethical dilemmas related to conflicts between their different roles, such as researcher, mentor, entrepreneur, and manager. It is not known how often uncertainty about conflicting role obligations leads scientists to engage in unethical conduct, but this probably occurs more often than many people would like to think. In this paper, we reflect on ethical decision-making in scientific laboratory management with special attention to how different roles create conflicting obligations and expectations that may produce moral uncertainty and lead to violations of research norms, especially when combined with self-interest and other factors that increase the risk of misbehavior. We also offer some suggestions and guidance for investigators and research institutions.

Serious and continuing research noncompliance and integrity violations undermine the quality of research and trust in science. When researchers engage in these behaviors, institutional officials (IOs) often develop corrective action plans. Ideally, such plans address the root causes so noncompliance or research integrity violations discontinue. The aim of this study was to identify what IOs perceive as causes and action plan activities typically prescribed. We conducted semi-structured in-depth interviews with 47 IOs at research institutions across the U.S. including: institutional review board and institutional animal care and use committee chairs and directors, chief research officers, research compliance and integrity officers, and institutional conflicts of interest chairs and directors. The most common root causes identified were: 1) lack of knowledge or training, 2) failure to provide research team supervision, and 3) researcher attitudes toward compliance. The most common action plan activities include: 1) retraining in compliance or research integrity, 2) follow-up and hands-on involvement with the researcher, and 3) mandated oversight or mentoring. Because the most commonly identified action plan activities fail to adequately address the majority of root causes, our findings suggest a need for IOs to rethink existing approaches to action plan development to more effectively target root causes.

The words integrity, ethics, and governance are used interchangeably in relation to research. This masks important differences that must be understood when trying to address concerns regarding research culture. While progress has been made in identifying negative aspects of research culture (such as inequalities in hiring/promotion, perverse incentives, etc.) and practical issues that lead to research waste (outcome reporting bias, reproducibility, etc.), the responsibility for addressing these problems can be unclear due to the complexity of the research environment. One solution is to provide a clearer distinction between the perspectives of "Research Integrity," "Research Ethics," and "Research Governance." Here, it is proposed that Research Integrity should be understood as focused on the character of researchers, and consequently the responsibility for promoting it lies primarily with researchers themselves. This is a different perspective from Research Ethics, which is focused on judgments on the ethical acceptability of research, and should primarily be the responsibility of research ethics committees, often including input from the public as well as the research community. Finally, Research Governance focuses on legal and policy requirements, and although complementary to research integrity and ethics, is primarily the responsibility of expert research support officers with the skills and experience to address technical compliance.

Citizen science (CS) is an umbrella term for research with a significant amount of contributions from volunteers. Those volunteers can occupy a hybrid role, being both 'researcher' and 'subject' at the same time. This has repercussions for questions about responsibility and credit, e.g. pertaining to the issue of authorship. In this paper, we first review some existing guidelines for authorship and their applicability to CS. Second, we assess the claim that the guidelines from the International Committee of Medical Journal Editors (ICMJE), known as 'the Vancouver guidelines', may lead to exclusion of deserving citizen scientists as authors. We maintain that the idea of including citizen scientists as authors is supported by at least two arguments: transparency and fairness. Third, we argue that it might be plausible to include groups as authors in CS. Fourth and finally, we offer a heuristic list of seven recommendations to be considered when deciding about whom to include as an author of a CS publication., (© 2024. The Author(s).)

Institutions are increasingly employing algorithms to provide performance feedback to individuals by tracking productivity, conducting performance appraisals, and developing improvement plans, compared to traditional human managers. However, this shift has provoked considerable debate over the effectiveness and fairness of algorithmic feedback. This study investigates the effects of negative performance feedback (NPF) on the attitudes, cognition and behavior of medical researchers, comparing NPF from algorithms versus humans. Two scenario-based experimental studies were conducted with a total sample of 660 medical researchers (algorithm group: N1 = 411; human group: N2 = 249). Study 1 analyzes the differences in scientific misconduct, moral disengagement, and algorithmic attitudes between the two sources of NPF. The findings reveal that NPF from algorithms shows higher levels of moral disengagement, scientific misconduct, and negative attitudes towards algorithms compared to NPF from humans. Study 2, grounded in trait activation theory, investigates how NPF from algorithms triggers individual's egoism and algorithm aversion, potentially leading to moral disengagement and scientific misconduct. Results indicate that algorithm aversion triggers individuals' egoism, and their interaction enhances moral disengagement, which in turn leads to increased scientific misconduct among researchers. This relationship is also moderated by algorithmic transparency. The study concludes that while algorithms can streamline performance evaluations, they pose significant risks to scientific misconduct of researchers if not properly designed. These findings extend our understanding of NPF by highlighting the emotional and cognitive challenges algorithms face in decision-making processes, while also underscoring the importance of balancing technological efficiency with moral considerations to promote a healthy research environment. Moreover, managerial implications include integrating human oversight in algorithmic NPF processes and enhancing transparency and fairness to mitigate negative impacts on medical researchers' attitudes and behaviors., (© 2024. The Author(s).)

Human challenge trials (HCTs) may accelerate the development of treatments and vaccines, and deliver novel insights into the course and consequences of infection. However, HCTs are contentious because they involve purposely exposing volunteers to infection. Consultation with the public and other stakeholders is essential for understanding how HCTs can be most ethically and acceptably pursued. Previous research has found public support for COVID-19 HCTs, but little research has considered public attitudes towards HCTs in principle and the various factors making a trial more or less acceptable. Empirical data on the attitudes of research personnel is also missing. We generated an online survey covering overarching support/opposition towards HCTs, as well as factors of importance for deciding whether or not an HCT is ethically acceptable. Our sample of the US public represents the responses of 1500 participants sampled via Prolific, poststratified to be representative of the general US adult population. We additionally collected a convenience sample of 33 research personnel engaged in phase III clinical trials for infectious diseases. Estimates for the US public suggest substantial support for using HCTs to develop new vaccines, new treatments, and knowledge about diseases, with similarly high support among research personnel. The most important factors in determining acceptability of an HCT were the risk to participants and their comprehension of this risk. The general public, in particular, appear relatively unconcerned about participants' motivations, and favor higher payment in accordance with risk. This study adds to a growing body of public consultation surrounding HCTs, demonstrating high levels of support for their use in principle-not just in relation to COVID-19. The importance attributed to various ethically-relevant factors can help in designing HCTs with high public acceptance., Competing Interests: This work was supported by an ACX Grant to 1Day Sooner, a 501(c)(3) non-profit organization that advocates for people who participate and want to participate in high-impact medical studies, including HCTs. Rethink Priorities was contracted by 1Day Sooner to execute this research project and collected and analyzed data independently of 1Day Sooner. This does not alter our adherence to PLOS ONE policies on sharing data and materials., (Copyright: © 2024 Elsey et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

This study investigated the ethical landscape of aging research amid the increasing global focus on extending the human lifespan and health span. Our global survey of 180 researchers across 38 jurisdictions revealed divergent perceptions of aging, a consensus regarding the feasibility of delaying aging, and multiple perspectives regarding lifespan extension. The present findings underscore a paradigm shift toward inclusive and ethically sound research, emphasizing the need for an approach that strikes a balance between basic and clinical research. In addition, this study highlighted key ethical concerns in aging research, including the effects of misleading advertising, potential inequality in access to aging interventions, and risks pertaining to the extrapolation of research findings from lower-model organisms to humans. The insights presented in this paper call for an integrated approach for overcoming the complex ethical and societal challenges in aging research to ensure responsible and equitable advancements in this burgeoning field., (© 2024. Science China Press.)

Background: Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures - utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists' and ELSI scholars' perspectives on collaborations with each other and the factors that may affect these collaborations., Methods: 20 semi-structured interviews with US-based genome scientists and ELSI scholars were conducted between June-September 2021. Interviews were analyzed using inductive thematic analysis., Results: Genome scientists and ELSI scholars provided different understandings of the value and goals of their collaborations with each other. Genome scientists largely perceived ELSI expertise to be relevant for human subjects research; they described ELSI scholars as communicators who help the public and/or study participants better understand genomics research. In comparison, ELSI scholars viewed themselves as developing and implementing policies; they expressed frustration at how scientists can misunderstand their research methods or negatively perceive them. A combination of factors - both structural (e.g., criteria for promotion) and cultural (e.g., perceptions of what colleagues value and respect) - seemed to shape these diverging perspectives., Conclusion: Academic institutions, funders, and researchers commonly call for collaborations between genome scientists and ELSI scholars, but under-consider how their different conceptual frameworks, research methods, goals, norms, and values, conjoin to affect such partnerships. Acknowledging, exploring, and addressing the complex interplay between these factors could help to more effectively facilitate collaborations between genome scientists and ELSI scholars.

Health-related innovation in biotechnology requires anticipating potential bioethical implications. In this article, we present a strategy to embed ethics in a group of early-stage researchers performing research in gene therapy and regenerative medicine in the laboratory phase. We conducted a series of focus group meetings with early-stage researchers who work in biotechnology laboratories. The objective was to reflect on the bioethical challenges of their own work and to promote the integration of research ethics with laboratory practice. The activity was assessed with questionnaires completed by the researchers before and after the meetings, and the analyses of the focus groups' content. As a result of the focus group series, all participants changed their perspectives about ethical issues regarding their planned research, developed the ability to reflect and debate on research ethics and had increased awareness of ethical issues in their own research activities. Half of them made changes in their research work. The study provides a concrete strategy to embed ethics and to strengthen responsibility in laboratory research. It is a strategy that allows to perform ethics reflection "on site" and in "real time" and complements the classic strategy of ethics assessment of the research protocol before starting the research procedure.

Integrity in research is essential so that research can do what it is supposed to do: help us discover - or get closer to - the truth about the world and how it works. Research integrity means conducting oneself in ways that are worthy of the trust that the public invests in science. Efforts over the past five decades to ensure that researchers conduct themselves with integrity have focused on regulating researcher behavior. The suite of regulatory requirements - over 100 of them - is typically managed by an office of research compliance at universities and research institutions. The regulations, and the accompanying rules and policies, have created a regulatory-industrial complex that, while necessary, should give us pause. With the proliferation of regulations, professional organizations and certifications blossom, providing much-needed training and vouching for expertise in particular regulations. This credibility is crucial, but it also gives a false impression that we can regulate our way to ethical science. Creating a regulatory-industrial complex will not achieve our goal of an ethical research enterprise. We need to build ethical institutional cultures, engage the commitment of the entire research enterprise, and do the hard work of holding accountable the entire research ecosystem.

Background: Informed consent is the cornerstone of research ethics. One of its goals is that participants enter research with an understanding of what their participation entails. This paper is a study on how researchers understand the informed consent process. Previous studies have looked at this topic from a research participant perspective. However, few studies focus on the perspectives of the researchers. Therefore, this is an important paper that highlights an important issue (informed consent) from the perspective of those who administer it during research., Methods: In-depth interviews were conducted with 18 researchers from 3 different research centers in Malawi working in clinical trials. The data was analyzed using open code utilizing the thematic approach to qualitative data., Results: This study identified that researchers have good awareness of the role of informed consent, how important it is for participants to understand the given information and ways to adjust their practice accordingly when obtaining it in order to enhance participant understanding. According to the research staff, most participants do not really understand all the concepts of the study at the initial visit, they gain more understanding during subsequent visits. It was emphasized that the best method of facilitating informed consent is reading the informed consent to the participant, thus a face-to-face conversation. Long and complex informed consent was identified as one of the barriers to participant understanding of the informed consent. Shortening the informed consent form and having additional conversation with the participants was suggested as one way of improving participant comprehension., Conclusion: Most of the participants understand much of the information during subsequent visits as you keep reminding them since informed consent is an ongoing process. Existing relationship or trust between a participant and a researcher, may influence participants' decision and misguide their understanding on the purpose of the study. Adequate time should be allocated to informed consent discussions. Shortening the informed consent forms and having additional conversations with potential participants may help improve their understanding., (© 2024. The Author(s).)

This research explores the perspectives of academic physicists from three national contexts concerning their roles and responsibilities within the realm of science. Using a dataset comprised of 211 interviews with scientists working in China, the United States, and the United Kingdom, the study seeks to explain whether and in what manner physicists conceptualize scientific ethics within a global or national framework. The empirical findings bring to light disparities across nations in the physicists' perceptions of what constitutes responsible mentorship and engagement in public service. These cross-national variations underscore the moral agency of physicists as they navigate the ethical standards embraced by the global scientific community vis-à-vis those that are specific to their respective national contexts. The study's empirical insights may carry significant implications for both policymakers and ethicists, underscoring the imperative of soliciting and acknowledging the perspectives of academic scientists working and living in disparate national contexts when formulating comprehensive science ethics frameworks. Such inclusive and context-aware approaches to shaping ethics in science can contribute to the cultivation of a more robust and universally relevant ethical foundation for the scientific community., (© 2024. The Author(s).)

We reflect on our fieldwork experience from the Climate Heat Maternal and Neonatal Health Africa (CHAMNHA) project in Kilifi, Kenya, which focused on studying the effects of extreme heat on women during pregnancy, delivery and the post-partum period. We describe the ethical and practical challenges encountered, highlighting valuable lessons learned. We propose potential solutions to address issues concerning the reciprocity of vulnerable participants and the provision of childcare and food for accompanying children. Further, we address challenges related to engaging specific participants, interview cancellations attributed to extreme temperatures and discuss the perpetuation of inequalities by ethics and academic institutions. With the anticipated increase in research at the intersection of climate change-induced heat exposure and its impacts on human populations, research institutions and ethics committees in low- and middle-income countries are responsible for instituting guidelines that account for the risks for the subjects under study and the field researchers., (© The Author(s) 2023. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene.)

Research institutions often lack policies addressing the risks and benefits of enrolling "invested parties" such as investigators, research staff, and patient, caregiver, and community representatives (groups most affected by a disease or intervention) in studies where they have direct involvement. Invested parties may have both strong motivations to study the condition or intervention and to participate as study subjects. More guidance is needed to promote appropriate access to research participation and mitigate potential risks. This article addresses the gap in guidance by presenting an ethical framework and practical guidelines for the enrollment of invested parties. Drawing from experiences with the Researching COVID to Enhance Recovery (RECOVER) Initiative, a large multisite observational cohort study, we argue that invested parties should not be categorically excluded from enrollment in their own research studies if certain criteria are met and appropriate safeguards are in place. We underscore the need to balance inclusion with fairness, promote valid voluntary informed consent, ensure data privacy, protect scientific validity, and mitigate unique risks to invested parties as participants. Additionally, we recommend regular reporting and empirical assessment to evaluate the impact of enrolling invested parties on participants and study outcomes., (© 2024 The Authors. Ethics & Human Research, published by Wiley Periodicals LLC on behalf of The Hastings Center.)

If we assume that nonhuman animals experience pain or distress, then ethically justifying human-centered research with only nonhuman animals as subjects likely requires that the research's benefits to humans must, at least, outweigh harms suffered by the nonhuman animals. Yet this reasoning does not seem to account well for the ethical view that nonhuman animals are morally valuable in their own right. This commentary on a case considers this ethical tension and discusses how clinician-researchers should navigate it. This commentary also suggests why clinician-researchers' reasoning about the nature and scope of their obligations to nonhuman animals extends beyond governing regulations and federal oversight, which is silent on or ambiguous about nonhuman animals as morally valuable in their own right., (Copyright 2024 American Medical Association. All Rights Reserved.)

Purpose: Adolescent participation in health research studies is critical yet complex given the lack of clarity around issues such as consent. This study aimed to understand how those conducting research in Australia navigate research ethics in health research involving adolescents, through qualitative interviews., Methods: Purposive sampling was used to recruit 23 researchers involved in adolescent health research using semi-structured in-depth interviews. Interviews were conducted via Zoom and audio-recorded after obtaining informed consent. Thematic analysis was used to construct themes and data were organised using NVivo., Results: Two contrasting positions emerged from the data: (1) framing of adolescents as inherently vulnerable, their participation in research understood in terms of risk and protection and (2) adolescent engagement in research is understood in terms of empowerment, emphasising their capacity to make decisions about research participation. We traced these positions through three key themes, particularly in relation to the role of ethics committees: (1) competing positions as a result of inferior or superior knowledge about adolescent lives, (2) competing positions resulting in a risk averse or an empowerment approach, and (3) reflections on processes of obtaining consent which involves gatekeeping and tokenism., Discussion: Our study highlights the contentious topic of navigating ethics committee requirements for the needs of adolescents. Majority of participants felt the current research ethics establishment is not favourable for researchers or adolescents themselves. While it is imperative that perceptions of ethics committees also be studied in the future, our study provides preliminary understanding of how experiences and perceptions shape how researchers interact with the research ethics establishment., (Copyright © 2024 Society for Adolescent Health and Medicine. Published by Elsevier Inc. All rights reserved.)

The ethical decision making of researchers has historically been studied from an individualistic perspective. However, researchers rarely work alone, and they typically experience ethical dilemmas in a team context. In this mixed-methods study, 67 scientists and engineers working at a public R1 (very high research activity) university in the United States responded to a survey that asked whether they had experienced or observed an ethical dilemma while working in a research team. Among these, 30 respondents agreed to be interviewed about their experiences using a think-aloud protocol. A total of 40 unique ethical incidents were collected across these interviews. Qualitative data from interview transcripts were then systematically content-analyzed by multiple independent judges to quantify the overall ethicality of team decisions as well as several team characteristics, decision processes, and situational factors. The results demonstrated that team formalistic orientation, ethical championing, and the use of ethical decision strategies were all positively related to the overall ethicality of team decisions. Additionally, the relationship between ethical championing and overall team decision ethicality was moderated by psychological safety and moral intensity. Implications for future research and practice are discussed., (© 2024. The Author(s).)

Introduction: Digitisation of patient records, coupled with a moral imperative to use routinely collected data for research, necessitate effective data governance that both facilitates evidence-based research and minimises associated risks. The Generalisable Overview of Study Risk for Lead Investigators Needing Guidance (GOSLING) provides the first quantitative risk-measure for assessing the data-related risks of clinical research projects., Methods: GOSLING employs a self-assessment designed to standardise risk assessment, considering various domains, including data type, security measures, and public co-production. The tool categorises projects into low, medium, and high-risk tiers based on a scoring system developed with the input of patient and public members. It was validated using both real and synthesised project proposals to ensure its effectiveness at triaging the risk of requests for health data., Results: The tool effectively distinguished between fifteen low, medium, and high-risk projects in testing, aligning with subjective expert assessments. An interactive interface and an open-access policy for the tool encourage researchers to self-evaluate and mitigate risks prior to submission for data governance review. Initial testing demonstrated its potential to streamline the review process by identifying projects that may require less scrutiny or those that pose significant risks., Discussion: GOSLING represents the first quantitative approach to measuring study risk, answering calls for standardised risk assessments in using health data for research. Its implementation could contribute to advancing ethical data use, enhancing research transparency, and promoting public trust. Future work will focus on expanding its applicability and exploring its impact on research efficiency and data governance practices., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Arora et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

We draw on ethnographic fieldwork conducted in Brussels (Belgium) on the health care experiences of undocumented migrants. We explore the implications of the double position of the ethnographer, who is both a researcher and a practicing doctor. We describe how the intimate knowledge the ethnographer-cum-clinician holds about the health care system influenced and shaped the data collection, analysis and subsequent policy recommendations. We examine the ethical dilemmas in conducting research from an engaged position about care practices toward vulnerable populations in one's own professional field. We conclude with recommendations on how to challenge and interrupt complexities faced by multi-positioned ethnographers.

Background: Research cites shortcomings and challenges facing research ethics committees in many regions across the world including Arab countries. This paper presents findings from qualitative in-depth interviews with research ethics committee (REC) chairs to explore their views on the challenges they face in their work with the oversight of research involving human populations., Methods: Virtual in-depth interviews were conducted with chairs (n = 11) from both biomedical and/or social-behavioral research ethics committees in six countries, transcribed, coded and subject to thematic analysis for recurring themes., Results: Two sets of recurring themes impede the work of the committees and pose concerns for the quality of the research applications: (1) procedures and committee level challenges such as heavy workload, variations in member qualification, impeding bureaucratic procedures, member overwork, and intersecting socio-cultural values in the review process; (2) inconsistencies in the researchers' competence in both applied research ethics and research methodology as revealed by their applications., Conclusions: Narratives of REC chairs are important to shed light on experiences and issues that are not captured in surveys, adding to the body of knowledge with implications for the region, and low- and middle-income countries (LMICs) in other parts of the world. International research collaborations could benefit from the findings., (© 2024. The Author(s).)

Coercion authorship (CA), typically enforced by principal investigators, has detrimental effects on graduate students, young researchers, and the entire scientific endeavor. Although CA is ubiquitous, its occurrence and major determinants have been mainly explored among graduate students and junior scientists in Sweden, Norway, and Denmark where the ratio of CA ranged from 13 to 40%. In addition to lacking comparable figures, developing countries usually lack institutional plans for promoting integrity and effective deterrents against CA and other malpractices. Hence, universities and research centers therein must publish their authorship policies and implement specific strategies to instruct graduate students, junior scientists, and experienced researchers on integrity, publishing ethics, and responsible authorship. Finally, I remark that the primary responsibility of principal researchers to promote fair authorship practices and discourage unfair ones is even greater when it comes to CA due to the asymmetrical power relationship between senior authors and novice scientists., Competing Interests: The author has no potential conflicts of interest to disclose., (© 2024 The Korean Academy of Medical Sciences.)

Ethics committees ensure compliance with ethical principles in medical research. They are oriented towards clinical studies, but also review e. g., qualitative research. Using a semi-structured online survey, we collected data on experiences of qualitative researchers with the review by ethics committees and analysed them via content analysis. In July 2019, 73 researchers took part in the survey. Five main topics were derived from their statements regarding the ethics review of qualitative research: 1. relevance of qualitative research expertise; 2. cooperation between researchers and ethics committees; 3. transparency of review criteria; 4. dealing with formal review requirements; 5. evaluation of the review's significance for qualitative research. The results show the potential of ethics review for reflection on ethical questions in qualitative research. Prerequisites for this are the fit with the characteristics and quality criteria of qualitative research, the presence of qualitative research expertise in ethics committees, the transparency of the ethics review process as well as openness to different professional cultures and a constructive communication culture., Competing Interests: Die Autorinnen/Autoren geben an, dass kein Interessenkonflikt besteht., (Thieme. All rights reserved.)

Concerns about research's environmental impacts have been articulated in the research arena, but questions remain about what types of role responsibilities are appropriate to place on researchers, if any. The research question of this paper is: what are the views of UK health researchers who use data-intensive methods on their responsibilities to consider the environmental impacts of their research? Twenty-six interviews were conducted with UK health researchers using data-intensive methods. Participants expressed a desire to take responsibility for the environmental impacts of their research, however, they were unable to consolidate this because there were often obstacles that prevented them from taking such role responsibilities. They suggested strategies to address this, predominantly related to the need for regulation to monitor their own behaviour. This paper discusses the implications of adopting such a regulatory approach as a mechanism to promote researchers' role responsibilities using a neo-liberal critique., (© 2024. The Author(s).)

Competing Interests: Competing interests: None declared.

Much has been published about the ethical issues encountered by clinicians in genetics/genomics, but those experienced by clinical laboratory scientists are less well described. Clinical laboratory scientists now frequently face navigating ethical problems in their work, but how they should be best supported to do this is underexplored. This lack of attention is also reflected in the ethics tools available to clinical laboratory scientists such as guidance and deliberative ethics forums, developed primarily to manage issues arising within the clinic.We explore what ethical issues are being experienced by clinical scientists, how they think such issues could be best analysed and managed, and whether their practice might be enhanced by more situated approaches to ethics deliberation and practice such as ethical preparedness. From thematic analysis of cases presented by clinical scientists at a specially convened meeting of the UK Genethics Forum, we derived three main ethical themes: (1) the redistribution of labour and responsibilities resulting from the practice of genomic medicine; (2) the interpretation and certainty of results and (3) the proposal that better standardisation and consistency of ethical approaches (for example, more guidelines and policy) could resolve some of the challenges arising.We argue that although standardisation is important for promoting shared understandings of good (including ethical) practice, supplementary approaches to enhance and sustain ethical preparedness will be important to help clinical scientists and others in the recently expanded genetic/genomic medicine environment foster quality ethical thinking., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ.)

The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global North, this mostly normative study explores this question by appealing to underexplored African philosophy. This is a new way of thinking about institutional responsibility to fund feedback and responds to the call to decolonise health research in Africa. Further studies are required to study how this prima facie obligation will interact with social contexts and an institution's extant relationships to find an actual duty. The research community should also work out procedures, policies and governance structures to facilitate feedback. In our opinion, though the impacts of feeding back can inform how institutions think about their actual duty, these do not obliterate the binding duty to fund feedback., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Online participant recruitment ("crowdsourcing") platforms are increasingly being used for research studies. While such platforms can rapidly provide access to large samples, there are concomitant concerns around data quality. Researchers have studied and demonstrated means to reduce the prevalence of low-quality data from crowdsourcing platforms, but approaches to doing so often involve rejecting work and/or denying payment to participants, which can pose ethical dilemmas. We write this essay as an associate professor and two institutional review board (IRB) directors to provide a perspective on the competing interests of participants/workers and researchers and to propose a checklist of steps that we believe may support workers' agency on the platform and lessen instances of unfair consequences to them while enabling researchers to definitively reject lower-quality work that might otherwise reduce the likelihood of their studies producing true results. We encourage further, explicit discussion of these issues among academics and among IRBs., (© 2024 The Authors. Ethics & Human Research published by Wiley Periodicals LLC on behalf of The Hastings Center.)

Authorship of academic publications is central to scientists' careers, but decisions about how to include and order authors on publications are often fraught with difficult ethical issues. To better understand scholars' experiences with authorship, we developed a novel concept, authorship climate , which assesses perceptions of the procedural, informational, and distributive justice associated with authorship decisions. We conducted a representative survey of more than 3,000 doctoral students, postdoctoral researchers, and assistant professors from a stratified random sample of U.S. biology, economics, physics, and psychology departments. We found that individuals who tend to have more power on science teams perceived authorship climate to be more positive than those who tend to have less power. Alphabetical approaches for assigning authorship were associated with higher perceptions of procedural justice and informational justice but lower perceptions of distributive justice. Individuals with more marginalized identities also tended to perceive authorship climate more negatively than those with no marginalized identities. These results illustrate how the concept of authorship climate can facilitate enhanced understanding of early-career scholars' authorship experiences, and they highlight potential steps that can be taken to promote more positive authorship experiences for scholars of all identities.

The term "Predatory" alludes to the assumption that these organizations prey on academics for financial gain by charging article processing charges (APC) while failing to meet scholarly publishing standards.Predatory publishing is a growing threat to the academic society. Considering this,the University Grants Commission (UGC),India's statutory body for higher education,has responded by launching the University Grants Commission-Consortium for Academic Research and Ethics (UGC-CARE) list,which attempts to promote research quality,integration,and publication ethics.An online survey was undertaken to determine the perception and awareness of North Eastern Hill University's researchers concerning predatory journals.A total of 160 respondents were recorded.The survey reveals that while the majority of participants (58.75%) were aware of predatory publications, a significant portion (41.25%) were not.It was found that a journal's listing in UGC-CARE list is the most crucial factor in submitting an original manuscript for publication.Researchers,aware of the negative consequences of publishing in piracy-related publications,prefer not to submit their scientific work to such publishers as it risk tarnishing their reputation.As a result,research findings emphasize the necessity for awareness initiatives to educate researchers about predatory publications early in their academic careers.Research initiatives like the UGC-CARE list should be encouraged to minimize predatory publishing; promote quality and transparency in research. Abbreviation: NEHU- North Eastern Hill University, UGC- University Grants Commission, APC- Article Processing Charge, UGC-CARE- University Grants Commission - Consortium for Academic Research and Ethics, DOAJ- Directory of Open Access Journals, DOI - Digital Object Identifiers, API- Academic Performance Indicator.

Background: Genetic research can yield information that is unrelated to the study's objectives but may be of clinical or personal interest to study participants. There is an emerging but controversial responsibility to return some genetic research results, however there is little evidence available about the views of genomic researchers and others on the African continent., Methods: We conducted a continental survey to solicit perspectives of researchers, science policy makers and research ethics committee members on the feedback of individual genetic research findings in African genomics research., Results: A total of 110 persons participated in the survey with 51 complete and 59 incomplete surveys received. Data was summarised using descriptive analysis. Overall, our respondents believed that individual genetic research results that are clinically actionable should be returned to study participants apparently because participants have a right to know things about their health, and it might also be a means for research participation to be recognized. Nonetheless, there is a need for development of precise guidance on how to return individual genetic research findings in African genomics research., Discussion: Participants should receive information that could promote a healthier lifestyle; only clinically actionable findings should be returned, and participants should receive all important information that is directly relevant to their health. Nevertheless, detailed guidelines should inform what ought to be returned. H3Africa guidelines stipulate that it is generally considered good practice for researchers to feedback general study results, but there is no consensus about whether individual genomic study results should also be fed back. The decision on what individual results to feedback, if any, is very challenging and the specific context is important to make an appropriate determination., (© 2024. The Author(s).)

The integration of normative analysis with empirical data often remains unclear despite the availability of many empirical bioethics methodologies. This paper sought bioethics scholars' experiences and reflections of doing empirical bioethics research to feed these practical insights into the debate on methods. We interviewed twenty-six participants who revealed their process of integrating the normative and the empirical. From the analysis of the data, we first used the themes to identify the methodological content. That is, we show participants' use of familiar methods explained as "back-and-forth" methods (reflective equilibrium), followed by dialogical methods where collaboration was seen as a better way of doing integration. Thereafter, we highlight methods that were deemed as inherent integration approaches, where the normative and the empirical were intertwined from the start of the research project. Second, we used the themes to express not only how we interpreted what was said but also how things were said. In this, we describe an air of uncertainty and overall vagueness that surrounded the above methods. We conclude that the indeterminacy of integration methods is a double-edged sword. It allows for flexibility but also risks obscuring a lack of understanding of the theoretical-methodological underpinnings of empirical bioethics research methods., (© 2023. The Author(s).)

Background: HIV molecular epidemiology (HIV ME) can support the early detection of emerging clusters of new HIV infections by combining HIV sequence data routinely obtained during the clinical treatment of people living with HIV with behavioral, geographic, and sociodemographic information. While information about emerging clusters promises to facilitate HIV prevention and treatment efforts, the use of this data also raises several ethical concerns. We sought to assess how those working on the frontlines of HIV ME, specifically public health practitioners (PHPs) and researchers, prioritized these issues., Methods: Ethical issues were identified through literature review, qualitative in-depth interviews, and stakeholder engagement. PHPs and researchers using HIV ME prioritized the issues using best-worst scaling (BWS). A balanced incomplete block design was used to generate 11 choice tasks each consisting of a sub-set of 5 ethical concerns. In each task, respondents were asked to assess the most and least concerning issue. Data were analyzed using conditional logit, with a Swait-Louviere test of poolability. Latent class analysis was then used to explore preference heterogeneity., Results: In total, 57 respondents completed the BWS experiment May-June 2023 with the Swait-Louviere test indicating that researchers and PHPs could be pooled (p = 0.512). Latent class analysis identified two classes, those highlighting "Harms" (n = 29) (prioritizing concerns about potential risk of legal prosecution, individual harm, and group stigma) and those highlighting "Utility" (n = 28) (prioritizing concerns about limited evidence, resource allocation, non-disclosure of data use for HIV ME, and the potential to infer the directionality of HIV transmission). There were no differences in the characteristics of members across classes., Conclusions: The ethical issues of HIV ME vary in importance among stakeholders, reflecting different perspectives on the potential impact and usefulness of the data. Knowing these differences exist can directly inform the focus of future deliberations about the policies and practices of HIV ME in the United States., (© 2024. The Author(s).)

The significance of the ethical review process in human-based research undertakings cannot be overemphasized as it is necessary to uphold ethical standards and protect participants. However, the review process per se can act as a bottleneck, potentially hindering research progress and leading to academic dishonesty. The present work explores the benefits and challenges of ethical review, emphasizing issues like intellectual theft, forced authorship, and the stifling of independent researchers. Proposed solutions include leveraging previously approved designs, empowering experienced professors for clearance, establishing panels of researchers, creating voluntary ethical approval offices, utilizing private consultancy offices, and establishing a transnational ethical clearance authority. In conclusion, this work stresses the importance of finding mechanisms to streamline the ethical review process while maintaining ethical standards to foster integrity in research and combat academic dishonesty., Competing Interests: The author declares no competing interests., (Copyright: Subah Abderehim Yesuf et al.)

Introduction: The universal health research ethical principles must be adhered to ensure a balance between science and safeguarding participants' rights, safety and dignity. A cross-sectional study was conducted to assess the knowledge, attitude, and practice of research ethics among researchers in Nepal., Methods: The study was carried out among 449 researchers who submitted proposals for ethical review and approval from the Ethical Review Board of the Nepal Health Research Council between January 2017 to August 2021. Simple random sampling was done ensuring a proportional representation of researchers from all areas of health research. A structured questionnaire was administered online for data collection., Results: The participants aged between 23-80 years old consented to complete the survey questionnaire. The median age of the respondents was 35 (23-80) years. Among all the respondents, 52 (11.58%) were unaware about the National Ethical Guideline for Health Research. Similarly, 110 (24.50%) respondents strongly agreed that the ethical review process impairs research and makes it harder for researchers to conduct research; 372 (82.85%) respondents had pursued research activity only after obtaining ethical approval., Conclusions: Half of the respondents had knowledge on different aspects of research ethics.