Research Ethics最新文献

{"title":"\"It <i>just feels morally not right</i> to Sell the data\": Ethical and social perspectives on human genomic data sharing in Uganda-A phenomenological qualitative study.","authors":"Deborah Ekusai-Sebatta, David Kyaddondo, David Kaawa-Mafigiri, John Barugahare, Jimmy Spire Ssentongo, Shenuka Singh, Erisa Mwaka","doi":"10.1177/17470161251361575","DOIUrl":"10.1177/17470161251361575","url":null,"abstract":"<p><p>While genomic data sharing enhances transparency and research efficiency, it also raises significant ethical and social challenges. This study explored stakeholders' perspectives on these issues, particularly around privacy, confidentiality, and equity in collaborative research. A phenomenological qualitative study was conducted between August and December 2023 at Makerere University College of Health Sciences, other research-intensive institutions, and national regulatory bodies. The study engaged 86 participants: 47 key informants (16 researchers, 14 ethics committee members, nine community advisory board members, and eight research regulators) and four deliberative focus group discussions with 39 participants. Interviews were transcribed verbatim, and thematic analysis was conducted using NVivo 14. Three major themes emerged: (1) stakeholders' experiences in genomic research, including their roles as participants, implementers, or overseers; (2) ethical concerns, such as informed consent, third-party data access, inequities between high-income and low- and middle-income country (LMIC) researchers and participants, and the lack of benefit-sharing frameworks; and (3) social implications, including stigma, discrimination, labeling, community perceptions of fairness, and the need for meaningful engagement. Participants emphasized the importance of protecting participant rights, promoting equity, and ensuring robust data governance and security. The theoretical frameworks of principlism and distributive justice provided a valuable lens for examining these concerns, particularly by highlighting the need to safeguard privacy and fairly distribute responsibilities and benefits in global collaborations. Participants also noted that perceptions of fairness are shaped by trust, local context, and past experiences with research factors that are critical for building equitable and respectful partnerships. This study underscores the urgent need to strengthen protections for research participants and promote fairness in genomic data sharing. Policies should, if adopted, emphasize culturally contextualized consent, active community engagement, restricted third-party data access, and strong data protection mechanisms to address existing inequities and prevent misuse.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12435449/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145076182","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding and processing informed consent during data-intensive health research in sub-Saharan Africa: challenges and opportunities from a multilingual perspective.","authors":"Lillian Omutoko, George Rugare Chingarande, Marietjie Botes, Farayi Moyana, Shenuka Singh, Walter Jaoko, Esperança Sevene, Tiwonge K Mtande, Ama Kyerewaa Edwin, Limbanazo Matandika, Theresa Burgess, Keymanthri Moodley","doi":"10.1177/17470161241274809","DOIUrl":"10.1177/17470161241274809","url":null,"abstract":"<p><p>Africa has a colonial past that renders it a linguistic melting pot, where language is not only important for communication but is inextricably related to cultural identity. In Africa, there are over 2000 languages that are still being used and spoken. Language diversity coupled with cultural diversity may affect the process of obtaining informed consent in data-intensive research. We explore some of the challenges and opportunities of multilingualism in handling informed consent in the context of data-intensive research. In multilingual contexts, as in most African countries, language is exceptionally central, and translation has potential cultural, social, historical, functional and scientific importance. However, it is recognised that terminological and translation activities may not always be cost-effective or feasible. We consider alternative mechanisms of harmonisation of data-related terminology and concepts in multilingual contexts, such as iconography, graphic elicitation and other multimedia formats of information sharing. The inclusion of visual or multimedia explanations in informed consent forms can improve comprehension, enhance information transfer and learning, reduce potential vulnerabilities associated with low literacy levels or the inability to interpret technical language associated with data-intensive research, build trust with participants and their communities, and promote autonomy of potential participants. We recognise that the inclusion of visual or multimedia content to facilitate information transfer is only one component of the informed consent process for data-intensive research. Research ethics committees (RECs) should be mindful of other key considerations and challenges of informed consent for data-intensive research in sub-Saharan Africa (SSA), and to explore whether these alternative forms of consent are ethical and effective in multilingual contexts.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"21 3","pages":"503-518"},"PeriodicalIF":2.2,"publicationDate":"2025-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12346138/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144849289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The responsible conduct of police participatory research: A qualitative study of officers' ethical beliefs.","authors":"Brandon Del Pozo, Lauren Magee, Alina Whiteside, Erin Thompson, Kaitlin Martins","doi":"10.1177/17470161251349607","DOIUrl":"https://doi.org/10.1177/17470161251349607","url":null,"abstract":"<p><p>The responsible conduct of research must be sensitive to the unique ethical concerns of the police setting, but we have yet to develop an empirical understanding of the ethics of research involving police officers as participants. To develop such an understanding, this study collected qualitative data from 30 officers serving in eight agencies throughout the United States. The interviews situated their ethical sensibilities about research in relation to the Belmont principles that serve as the dominant source of norms in U.S. research ethics, then evoked reactions about consent, compensation, confidentiality, and researchers' motives. The interviews focused on a) how police officers characterize the responsible conduct of research; b) the extent to which their reasoning tracks established ethical principles, and c) which elements of these principles they emphasize. The study also probed which actors and factors were likely to best protect the ethical interests of police as research participants, and how they could be operationalized in a police research setting. Officers stressed the role of the police sergeant as their ethical fiduciary in the planning and execution of research, the distinction between being neutral versus impartial in research, the acceptability of withholding research questions and hypotheses to ensure candid and forthcoming responses, and, generally, the importance of a form of procedural justice in the conduct of research in police settings. The findings provide recommendations for police participatory research that would empower investigators to interpret and navigate the attendant ethical concerns in the context of their own research tradition, encouraging more frequent and higher quality participation in research among police agencies and their officers.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-06-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12382591/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144972846","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Disclosing generative AI use for writing assistance should be voluntary.","authors":"Mohammad Hosseini, Bert Gordijn, Gregory E Kaebnick, Kristi Holmes","doi":"10.1177/17470161251345499","DOIUrl":"10.1177/17470161251345499","url":null,"abstract":"<p><p>Researchers have been using generative artificial intelligence (GenAI) to support writing manuscripts for several years now. However, as GenAI evolves and scientists are using it more frequently, the case for mandatory disclosure of GenAI for writing assistance continues to diverge from the initial justifications for disclosure, namely (1) preventing researchers from taking credit for work done by machines; (2) enabling other researchers to critically evaluate a manuscript and its specific claims; and (3) helping editors determine if a submission satisfies their editorial policies. Our initial position (communicated through previous publications) regarding GenAI use for writing assistance was in favor of mandatory disclosure. Nevertheless, as we show in this paper, we have changed our position and now support instituting a voluntary disclosure policy because currently (1) the credit due to machines for assisting researchers is moving below the threshold of requiring recognition; (2) it is impractical (if not impossible) to accurately specify what parts of the text are human-/GenAI-generated; and (3) disclosures could increase biases against non-native speakers of the English language and compromise the integrity of the peer review system. Consequently, we argue, it should be up to the authors of manuscripts to disclose their use of GenAI for writing assistance. For example, in disciplines where writing is the hallmark of originality, or when authors believe disclosure is beneficial, a voluntary checkbox in manuscript submission systems, visible only after publication (rather than a free-text note in the manuscripts) would be preferable.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":" ","pages":""},"PeriodicalIF":2.2,"publicationDate":"2025-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12425484/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145065892","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Deficient epistemic virtues and prevalence of epistemic vices as precursors to transgressions in research misconduct","authors":"B. Tang","doi":"10.1177/17470161231221258","DOIUrl":"https://doi.org/10.1177/17470161231221258","url":null,"abstract":"Scientific research is supposed to acquire or generate knowledge, but such a purpose would be severely undermined by instances of research misconduct (RM) and questionable research practices (QRP). RM and QRP are often framed in terms of moral transgressions by individuals (bad apples) whose aberrant acts could be made conducive by shortcomings in regulatory measures of organizations or institutions (bad barrels). This notion presupposes, to an extent, that the erring parties know exactly what they are doing is wrong and morally culpable, but had nonetheless proceeded to commit wrongful acts. However, a confession of intent to deceived is often not readily admitted by perpetrators of RM. I posit that beyond the simplistic notion of conscious moral transgression, deficits in epistemic virtues and/or the prevalence of epistemic vices have important roles to play in initiating and driving RM/QRP. For the individual perpetrator, deficits in epistemic virtues could lead to or amplify errors in one’s desperate attempt to be accomplished or to excel, and pushes one across the ethical line or down the slippery slope of misconduct. Likewise, a lack of epistemic virtue within perpetrators’ institution or organization could make it conducive for deceitful acts and suppress indications and warning signs for the former. Furthermore, epistemic vices exhibited by reviewers, editors and journals could also promote RM/QRP. In this view, epistemic failings, rather than widespread moral deficiencies of individuals within the research ecosystem, may underlie the prevalence of RM/QRP.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"19 6","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-01-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139387379","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"COVID-19 human challenge trials and randomized controlled trials: lessons for the next pandemic","authors":"Charles Weijer","doi":"10.1177/17470161231223594","DOIUrl":"https://doi.org/10.1177/17470161231223594","url":null,"abstract":"The COVID-19 pandemic touched off an unprecedented search for vaccines and treatments. Without question, the development of vaccines to prevent COVID-19 was an enormous scientific accomplishment. Further, the RECOVERY and Solidarity trials identified effective treatments for COVID-19. But all was not success. The urgent need for COVID-19 prevention and treatment fueled an embrace of risks—to research participants and to the reliability of the science itself—as allegedly necessary costs to speed scientific progress. Scientists and (even) ethicists supported overturning longstanding norms protecting healthy volunteers in human challenge trials to speed vaccine development, but these trials led to no vaccines. Physicians, with the approval of research ethics committees, designed hundreds of unblinded, single-center clinical trials at high risk of bias to speed the identification of new treatments. But these clinical trials led to no treatments. The lesson for future pandemics is that the acceptance of greater risks to participants or science does not reliably lead to progress. We are better served by science that upholds the highest ethical and methodological standards.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"142 6","pages":""},"PeriodicalIF":1.7,"publicationDate":"2024-01-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139387473","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Stakeholders' experiences of ethical challenges in cluster randomized trials in a limited resource setting: a qualitative analysis.","authors":"Tiwonge K Mtande, Carl Lombard, Gonasagrie Nair, Stuart Rennie","doi":"10.1177/17470161231191247","DOIUrl":"10.1177/17470161231191247","url":null,"abstract":"<p><p>Although the use of the cluster randomized trial (CRT) design to evaluate vaccines, public health interventions or health systems is increasing, the ethical issues posed by the design are not adequately addressed, especially in low- and middle-income country settings (LMICs). To help reveal ethical challenges, qualitative interviews were conducted with key stakeholders experienced in designing and conducting two selected CRTs in Malawi. The 18 interviewed stakeholders included investigators, clinicians, nurses, data management personnel and community workers who were invited to share their experiences related to implementation of CRTs. Data analysis revealed five major themes with ethical implications: (1) The moral obligation for health care providers to participate in health research and its compensation; (2) Suboptimal care services compromising the integrity of CRT; (3) Ensuring scientific validity and withholding care service; (4) Obtaining valid consent and permission for waiver of consent; and (5) Inadequate risk assessment for trial participation. Understanding key ethical issues posed by CRTs in Malawi could improve ethical review and research oversight of this particular study design.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"42 1","pages":"64-78"},"PeriodicalIF":2.1,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12077595/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"82220035","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Needs and preferences of REB members in the development of a new TCPS 2 training program in Canada","authors":"Jiale Xie, Denise Stockley, Amber Hastings Truelove, Susan Marlin, Rachel Zand, Jennifer Payne, Miranda Miller, Eleftherios K. Soleas","doi":"10.1177/17470161231218173","DOIUrl":"https://doi.org/10.1177/17470161231218173","url":null,"abstract":"Despite advancements in human research ethics and the growing significance of Research Ethics Board (REB) members, educational opportunities specifically tailored to their needs remain lacking in many countries. In response to this gap, our research aims to understand the demographics, needs, and preferences for educational opportunities of REB members in Canada. We conducted a survey that found REB demographics to be diverse and have different perceptions of their roles on topics such as the evaluation of the scientific merit of studies and responsibilities to stakeholders. We found that REB members in general prefer online tutorials and webinars for their education. Educators interested in facilitating the development of future training programs should consider the needs and preferences of REB members outlined in this publication.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"10 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138996688","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Challenges facing Arab researchers in conducting and publishing scientific research: a qualitative interview study","authors":"A. Elgamri, Zeinab Mohammed, Karima El-Rhazi, M. Shahrouri, Mamoun Ahram, Al-Mubarak Al-Abbas, Henry Silverman","doi":"10.1177/17470161231214636","DOIUrl":"https://doi.org/10.1177/17470161231214636","url":null,"abstract":"Arab researchers encounter formidable obstacles when conducting and publishing their scientific work. We conducted semi-structured interviews with 17 Arab researchers from various Arab Middle East countries to gain a comprehensive understanding of the difficulties they face in research and publication. We analyzed the transcripts using reflexive thematic analysis. Our findings revealed several key challenges. First, Arab researchers struggle to conduct high-quality research due to limited resources, inadequate funding, and a lack of a supportive research infrastructure. Furthermore, a shortage of teamwork and mentoring diminishes research productivity. Perverse promotion policies, heavy teaching loads, and low salaries force many researchers to seek external income sources, leaving them with insufficient time for research. Regarding publishing in high-impact journals, Arab researchers confront challenges existing of insufficient scientific writing skills, underrepresentation on editorial boards, and unconscious biases against researchers from economically challenged areas. Finally, achieving research integrity is closely tied to lack of access to essential resources. To address these issues, our participants proposed targeted interventions at the institutional and external levels. For example, universities can implement mentoring programs, offer workshops on scientific writing and publishing, and foster a supportive institutional culture for research. Addressing the underrepresentation of Arabic researchers on editorial boards is crucial for equity in global scientific publishing. In conclusion, acknowledging and addressing these challenges will empower Arab researchers, elevate research quality, and promote equitable global scientific collaboration. Our findings provide guidance for universities, governments, and international donors seeking to enhance research and publication practices in the Arab Middle East.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"9 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139005400","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Passive data collection on Reddit: a practical approach","authors":"Tiago Rocha-Silva, Conceição Nogueira, Liliana Rodrigues","doi":"10.1177/17470161231210542","DOIUrl":"https://doi.org/10.1177/17470161231210542","url":null,"abstract":"Since its onset, scholars have characterized social media as a valuable source for data collection since it presents several benefits (e.g. exploring research questions with hard-to-reach populations). Nonetheless, methods of online data collection are riddled with ethical and methodological challenges that researchers must consider if they want to adopt good practices when collecting and analyzing online data. Drawing from our primary research project, where we collected passive online data on Reddit, we explore and detail the steps that researchers must consider before collecting online data: (1) planning online data collection; (2) ethical considerations; and (3) data collection. We also discuss two atypical questions that researchers should also consider: (1) how to handle deleted user-generated content; and (2) how to quote user-generated content. Moving on from the dichotomous discussion between what is public and private data, we present recommendations for good practices when collecting and analyzing qualitative online data.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"77 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139225196","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}