Research Ethics最新文献

{"title":"Reporting incidental findings from non-biological assessments in human subject research","authors":"A. Pingitore, Ashley Mack, Justin Zhang, Eric G. Devine, Jackson Doerr, Caroline Denneen","doi":"10.1177/17470161221093877","DOIUrl":"https://doi.org/10.1177/17470161221093877","url":null,"abstract":"Incidental findings in research with human participants may have implications for a person’s present health or future health outcomes. Current guidelines focus on methods for handling and reporting incidental findings from biological test data but incidental findings might also arise from non-biological tests. This article presents three examples in which the results from non-biological test data can be predictive of future disease and should be disclosed to research participants. It is intended to increase awareness and facilitate further discussion about the reporting of incidental findings from non-biological data.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":" 44","pages":"241 - 249"},"PeriodicalIF":1.7,"publicationDate":"2022-04-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"72384907","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":"Ethical considerations in social media analytics in the context of migration: lessons learned from a Horizon 2020 project","authors":"Jamie Mahoney, Kahina Le Louvier, S. Lawson, Diotima Bertel, E. Ambrosetti","doi":"10.1177/17470161221087542","DOIUrl":"https://doi.org/10.1177/17470161221087542","url":null,"abstract":"The ubiquitous use of social platforms across the globe makes them attractive options for investigating social phenomena including migration. However, the use of social media data raises several crucial ethical issues around the areas of informed consent, anonymity and profiling of individuals, which are particularly sensitive when looking at a population such as migrants, which is often considered as ‘vulnerable’. In this paper, we discuss how the opportunities and challenges related to social media research in the context of migration impact on the development of large-scale scientific projects. Building on the EU-funded research project PERCEPTIONS, we explore the concrete challenges experienced in such projects regarding profiling, informed consent, bias, data sharing and ethical approval procedures, as well as the strategies used to mitigate them. We draw from lessons learned in this project to discuss implications and recommendations to researchers, funders and university ethics review panels. This paper contributes to the growing discussion on the ethical challenges associated with big social data research projects on migration by highlighting concrete aspects stakeholders should be looking for and questioning when involved in such large-scale scientific projects where collaboration, data sharing and transformation and practicalities are of importance.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"59 1","pages":"226 - 240"},"PeriodicalIF":1.7,"publicationDate":"2022-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"76348333","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":"Ethical issues in multilingual research situations: a focus on interview-based research","authors":"Natalie Schembri, Alma Jahić Jašić","doi":"10.1177/17470161221085857","DOIUrl":"https://doi.org/10.1177/17470161221085857","url":null,"abstract":"Interview-based research in multilingual situations can present researchers with specific ethical challenges relating to language-based power play, data handling and presentation. Studies indicate favouring the L1 (first language) as an interviewing language may produce better quality data, but external pressures can favour English as the dominant research language. This article examines researcher perceptions and experiences of the ethical consequences of language choice and the practical issues involved. Interviews were conducted with five European researchers working on an interview-based project with experiences of diverse interviewing scenarios. The four moral principles of respect for autonomy, justice, beneficence and non-maleficence were used as a framework for analysis. The analysis revealed a nuanced picture of ethical issues in both L1- and English-oriented scenarios. This included potential misrepresentation and deculturalisation of the data in the former, and language-based power asymmetries in the latter. The findings highlight the importance of documenting ethics-related methodological details of language use, and advocates publication practices favouring the inclusion and foregrounding of L1 data.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"29 1","pages":"210 - 225"},"PeriodicalIF":1.7,"publicationDate":"2022-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"89175929","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":"Reporting and discoverability of “Tweets” quoted in published scholarship: current practice and ethical implications","authors":"S. Mason, Lenandlar Singh","doi":"10.1177/17470161221076948","DOIUrl":"https://doi.org/10.1177/17470161221076948","url":null,"abstract":"Twitter is an increasingly common source of rich, personalized qualitative data, as millions of people daily share their thoughts on myriad topics. However, questions remain unclear concerning if and how to quote publicly available social media data ethically. In this study, focusing on 136 education manuscripts quoting 2667 Tweets, we look to investigate the ways in which Tweets are quoted, the ethical discussions forwarded and actions taken, and the extent to which quoted Tweets are “discoverable.” A concerning result is that in almost all manuscripts, and for around half of all quoted Tweets, the original author could be identified. Drawing on our findings we share some ethical dilemmas, including those that arise from an apparent lack of understanding of the technical aspects of the platform, and offer suggestions for promoting ethically-informed practice.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"41 1","pages":"93 - 113"},"PeriodicalIF":1.7,"publicationDate":"2022-02-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88800044","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":"Scientific journals must be alert to potential manipulation in citations and referencing","authors":"Mina Mehregan","doi":"10.1177/17470161211068745","DOIUrl":"https://doi.org/10.1177/17470161211068745","url":null,"abstract":"Citation is an essential practice in scientific publishing. However, it is mandatory that citing the sources in a scientific work is performed in a proper manner. Manipulating citations in research articles is one form of academic research misconduct that violates publication ethics. Citation manipulation simply occurs for the purpose of increasing the number of citations of a researcher or a journal. Unfortunately, there has been a growing trend for this type of misconduct recently and this has not received much attention from the science community. The most effective solution to prevent the growth of such unethical practices is for reputable journals to impose stricter rules on reference evaluation criteria in order to emphasize on the appropriateness of the citations.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"79 1","pages":"163 - 168"},"PeriodicalIF":1.7,"publicationDate":"2022-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80141938","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":"Using Wearable Cameras to Investigate Health-Related Daily Life Experiences: A Literature Review of Precautions and Risks in Empirical Studies.","authors":"Laurel E Meyer,&nbsp;Lauren Porter,&nbsp;Meghan E Reilly,&nbsp;Caroline Johnson,&nbsp;Salman Safir,&nbsp;Shelly F Greenfield,&nbsp;Benjamin C Silverman,&nbsp;James I Hudson,&nbsp;Kristin N Javaras","doi":"10.1177/17470161211054021","DOIUrl":"https://doi.org/10.1177/17470161211054021","url":null,"abstract":"<p><p>Automated, wearable cameras can benefit health-related research by capturing accurate and objective information about individuals' daily experiences. However, wearable cameras present unique privacy- and confidentiality-related risks due to the possibility of the images capturing identifying or sensitive information from participants and third parties. Although best practice guidelines for ethical research with wearable cameras have been published, limited information exists on the risks of studies using wearable cameras. The aim of this literature review was to survey risks related to using wearable cameras, and precautions taken to reduce those risks, as reported in empirical research. Forty-five publications, comprising 36 independent studies, were reviewed, and findings revealed that participants' primary concerns with using wearable cameras included physical inconvenience and discomfort in certain situations (e.g., public settings). None of the studies reviewed reported any serious adverse events. Although it is possible that reported findings do not include all risks experienced by participants in research with wearable cameras, our findings suggest a low level of risk to participants. However, it is important that investigators adopt recommended precautions, which can promote autonomy and reduce risks, including participant discomfort.</p>","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"18 1","pages":"64-83"},"PeriodicalIF":1.7,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9307222/pdf/nihms-1761547.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10464412","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":"Personalising the dilemma: research ethics in fiction","authors":"S. Dalton-Brown","doi":"10.1177/17470161211066445","DOIUrl":"https://doi.org/10.1177/17470161211066445","url":null,"abstract":"Learning about research ethics and research integrity is greatly facilitated by case studies, which illuminate, ground and personalise abstract questions. This paper argues that fiction can provide similar learning experiences, incarnating ethical dilemmas through a medium that is highly accessible yet sophisticated in its depictions of how researchers behave. Examples of fictional illustrations are given to illustrate various themes such as animal experimentation, exploitation of the vulnerable, researcher bias and research fraud.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"22 1","pages":"114 - 125"},"PeriodicalIF":1.7,"publicationDate":"2021-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79943234","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":"Motives and risk perceptions of participants in a phase 1 trial for Hepatitis C Virus investigational therapy in pregnancy","authors":"Y. Kislovskiy, C. Chappell, Emily Flaherty, M. Hamm, F. de Abril Cameron, E. Krans, Judy C. Chang","doi":"10.1177/17470161211066159","DOIUrl":"https://doi.org/10.1177/17470161211066159","url":null,"abstract":"Limited research has been done among pregnant people participating in investigational drug trials. To enhance the ethical understanding of pregnant people’s perspectives on research participation, we sought to describe motives and risk perceptions of participants in a phase 1 trial of ledipasvir/sofosbuvir (LDV/SOF) treatment for chronic Hepatitis C virus (HCV) during pregnancy. Pregnant people with chronic HCV infection enrolled in an open-label, phase 1 study of LDV/SOF participated in semi-structured, in-depth interviews to explore their reasons for participation and experiences within the study. Pregnant people took 12 weeks of LDV/SOF and were interviewed at enrollment and at the end of study. We recorded the interviews, transcribed them verbatim, coded them using NVivo software, and performed inductive thematic analysis. Nine women completed the study yielding 18 interview transcripts. We identified two themes regarding motives and one regarding risk perception. Motives—(1) Women conceptualized study participation as part of the caregiving role they associate with motherhood; participating was viewed as an act of caregiving for their infants, their families, themselves, and other pregnant women with chronic HCV. (2) Women also noted that they faced multiple barriers to treatment prior to pregnancy that created a desire to receive therapy through trial participation. Risk perception—(3) Women acknowledged personal and fetal risk associated with participation. Acceptance of risk was influenced by women’s concepts of motherhood, preexisting knowledge of HCV and medical research, family members, intimate partners, or by the study design. Women enrolled in a phase 1 trial for chronic HCV therapy during pregnancy acknowledged risks of participation and were motivated by hopes for fetal and personal benefit and by lack of prenatal access to treatment. Ethical inclusion of pregnant people in research should acknowledge structural factors that contribute to vulnerability and data deficiencies for treatment in pregnancy.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"39 1","pages":"132 - 150"},"PeriodicalIF":1.7,"publicationDate":"2021-12-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86870016","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":"Waving away waivers: an obligation to contribute to ‘herd knowledge’ for data linkage research?","authors":"Owen M. Bradfield","doi":"10.1177/17470161211058311","DOIUrl":"https://doi.org/10.1177/17470161211058311","url":null,"abstract":"In today’s online data-driven world, people constantly shed data and deposit digital footprints. When individuals access health services, governments and health providers collect and store large volumes of health information about people that can later be retrieved, linked and analysed for research purposes. This can lead to new discoveries in medicine and healthcare. In addition, when securely stored and de-identified, the privacy risks are minimal and manageable. In many jurisdictions, ethics committees routinely waive the requirement for researchers to obtain consent from data subjects before using and linking these datasets in an effort to balance respect for individuals with research efficiency. In this paper, I explore the ethical justification for using routinely collected health data for research without consent. I conclude that, not only is this morally justified but also that data subjects have a moral obligation to contribute their data to such research, which would obviate the need for ethics committees to consider consent waivers. In justifying this argument, I look to the duty of easy rescue, distributive justice and draw analogies with vaccination ethics.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"12 1","pages":"151 - 162"},"PeriodicalIF":1.7,"publicationDate":"2021-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85583517","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":"Equality and Equity in Compensating Patient Engagement in Research: A Plea for Exceptionalism","authors":"J. Bélisle-Pipon, V. Couture, Marie-Christine Roy","doi":"10.1177/17470161211059993","DOIUrl":"https://doi.org/10.1177/17470161211059993","url":null,"abstract":"Engaging citizens and patients in research has become a truism in many fields of health research. It is now seen as a laudable—if not compulsory—activity in research for yielding more impactful and meaningful citizen/patient outcomes and steering research in the right direction. Although this research approach is increasingly common and commendable, we recently encountered a major obstacle in obtaining an ethics certificate from an institutional review board (IRB) to conduct a study that places citizen/patient perspectives on equal footing with those of academic/policy experts. The obstacle was the interpretation of fairness in terms of compensation for research participation (i.e. honoraria). In terms of research ethics, this raised an important question: Should all types of participants be compensated equally, or should exceptions be made for citizen/patient participants? We argue that there are good reasons for exceptionalism and that clearer guidance on citizen/patient engagement in research should be embedded into research ethics doctrine.","PeriodicalId":38096,"journal":{"name":"Research Ethics","volume":"30 1","pages":"126 - 131"},"PeriodicalIF":1.7,"publicationDate":"2021-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"78981481","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}