9,538 results on '"*RESEARCH ethics"'
Search Results
2. Researching Kashmir: Power, Position, and Ethics.
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Bhan, Mona, Junaid, Mohamad, and Kanjwal, Hafsa
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RESEARCH ethics , *RESEARCHER positionality , *ISLAMOPHOBIA , *HINDUS - Abstract
This roundtable discusses the future of research in critical Kashmir studies through a close consideration of questions of power, ethics, and positionality that have come to the fore in recent years. [ABSTRACT FROM AUTHOR]
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- 2023
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3. Beyond the Repository: Best practices for open source ecosystems researchers.
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CASARI, AMANDA, FERRAIOLI, JULIA, and LOVATO, JUNIPER
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OPEN source software , *RESEARCH personnel , *RESEARCH ethics , *ACQUISITION of data , *OPEN data movement , *DATA privacy , *INFORMED consent (Law) - Abstract
This article details best practices for open source ecosystems research to uphold the integrity of ecosystems. The article details nine best practices as a guide for researchers working with ecosystems with an emphasis on ethics and respect. Topics include understanding and adhering to information usage policies, data collection methods, and collaboration with the communities involved with these ecosystems.
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- 2023
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4. Implementing a School‐Based Health Center Virtual Care Program: A Qualitative Exploration of the School Nurse Perspective.
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Burnett, Honora Quinn, Boral, Alyssa, Schaap, Samantha, Haas‐Howard, Christy, and O'Leary, Sonja
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NURSES , *HUMAN services programs , *QUALITATIVE research , *RESEARCH funding , *PUBLIC sector , *SCHOOLS , *INTERVIEWING , *HEALTH policy , *PILOT projects , *CONFIDENTIAL communications , *TELEMEDICINE , *THEMATIC analysis , *SOUND recordings , *SCHOOL nursing , *NURSES' attitudes , *RESEARCH methodology , *VIDEOCONFERENCING , *STUDENT health , *SCHOOL health services , *RESEARCH ethics - Abstract
BACKGROUND: School‐based health centers (SBHCs) have the capability to overcome youth barriers to care. Virtual care programs (VCP) facilitate connection between school nurse and off‐site SBHC providers and can increase the reach of SBHCs. This project aimed to examine Denver Public School nurses' perspectives of a pilot VCP. METHODS: Thirteen semi‐structured qualitative interviews were conducted and coded using an inductive approach to identify key themes. RESULTS: Four major themes emerged: (1) obtaining consent, finding space, and capacity are challenges and nurses have suggestions; (2) nurses enjoy feeling like a valued member of a health care team, and providing additional resources to students; (3) nurses perceive benefits in providing free, efficient, higher level of care; (4) adopting novel technology is a facilitator and challenge; limitations included space and privacy. CONCLUSIONS: Key findings can be utilized to further inform practice. [ABSTRACT FROM AUTHOR]
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- 2024
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5. Surgical Handover Core Outcome Measures (SH-CORE): a protocol for the development of a core outcome set for trials in surgical handover.
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Ryan, Jessica M., Devane, Declan, Simiceva, Anastasija, Eppich, Walter, Kavanagh, Dara O., Cullen, Christine, Hogan, Aisling M., and McNamara, Deborah A.
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PATIENTS' attitudes , *MEDICAL personnel , *RESEARCH ethics , *RESEARCH personnel , *ROAMING (Telecommunication) - Abstract
Background: Surgical handover is associated with a significant risk of care failures. Existing research displays methodological deficiencies and little consensus on the outcomes that should be used to evaluate interventions in this area. This paper reports a protocol to develop a core outcome set (COS) to support standardisation, comparability, and evidence synthesis in future studies of surgical handover between doctors. Methods: This study adheres to the Core Outcome Measures in Effectiveness Trials (COMET) initiative guidance for COS development, including the COS-Standards for Development (COS-STAD) and Reporting (COS-STAR) recommendations. It has been registered prospectively on the COMET database and will be led by an international steering group that includes surgical healthcare professionals, researchers, and patient and public partners. An initial list of reported outcomes was generated through a systematic review of interventions to improve surgical handover (PROSPERO: CRD42022363198). Findings of a qualitative evidence synthesis of patient and public perspectives on handover will augment this list, followed by a real-time Delphi survey involving all stakeholder groups. Each Delphi participant will then be invited to take part in at least one online consensus meeting to finalise the COS. Ethics and dissemination: This study was approved by the Royal College of Surgeons in Ireland (RCSI) Research Ethics Committee (202309015, 7th November 2023). Results will be presented at surgical scientific meetings and submitted to a peer-reviewed journal. A plain English summary will be disseminated through national websites and social media. The authors aim to integrate the COS into the handover curriculum of the Irish national surgical training body and ensure it is shared internationally with other postgraduate surgical training programmes. Collaborators will be encouraged to share the findings with relevant national health service functions and national bodies. Discussion: This study will represent the first published COS for interventions to improve surgical handover, the first use of a real-time Delphi survey in a surgical context, and will support the generation of better-quality evidence to inform best practice. Trial registration: Core Outcome Measures in Effectiveness Trials (COMET) initiative 2675. http://www.comet-initiative.org/Studies/Details/2675. [ABSTRACT FROM AUTHOR]
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- 2024
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6. Research Ethics and International and Cross-Cultural Research: Fiji and Aotearoa New Zealand.
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Cossham, Amanda, Bidwell, Pam, and Pai, Lorin
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There are significant challenges associated with conducting research with a researcher from another institution, in another country or with another culture, and even more challenges when all three factors apply. This paper critically appraises the complexities of a cross-cultural, international and collaborative research project, and identifies the challenges for the researchers and their organisations, and the ways in which these were managed. It evaluates the process of obtaining ethics approval from two organisations in Aotearoa New Zealand and Fiji. This paper presents the perspectives of both the researchers and the organisations providing ethics approval. There is often concern that research conducted by someone from a ‘global north’ country (here, Aotearoa New Zealand) in a ‘global south’ country (here, Fiji) will have power asymmetries, and that research will disadvantage the researched community, or not provide any benefit back to them; this project directly addressed these concerns. The research outputs, and research outcomes and impact, need to be considered at the research design stage to ensure they are appropriate for the community in which the research is being conducted. While organisations may be reluctant to approve research conducted in a different culture and country, the risks can be managed and mitigated. [ABSTRACT FROM AUTHOR]
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- 2024
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7. Developing an Evidence-Based Ethics Education Program for Surgical Residents in Guatemala.
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Aguilera Arévalo, Maria Lorena, Martínez Seikavizza, Sergio Nicolás, Rodriguez, Ery Mario, Siguantay, Miguel Angel, Solares Ovalle, Jorge Fernando, Talé Rosales, Luis Fernando, and Barchi, Francis
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SURGICAL education , *ETHICS education , *EVIDENCE-based education , *ETHICAL decision making , *FRAUD in science , *ONLINE education - Abstract
OBJECTIVE: This study assessed 2 modalities for teaching responsible conduct of research and human subjects protection (RCR/HSP) to surgical residents in Guatemala—an "off the shelf" online curriculum and a new in-person curriculum specific to the local context. METHODS: In 2018, 160 surgical residents in 3 large urban hospitals in Guatemala City completed 2 online programs in RCR/HSP. Residents in the intervention arm also completed 7 weeks of in-person training. Pre- and post-assessments tested awareness of key concepts with particular attention to international and Guatemalan research regulations. Group differences in matched (pre- and post-) mean scores were analyzed using t -tests. RESULTS: One hundred forty residents completed pre- and post-training assessments and were included in the analytic sample. Overall mean scores improved modestly from 52.7 to 58.7 points out of 100. Intervention-arm trainees reported greater confidence in recognizing ethical issues, understanding legal and ethical requirements for research, and identifying, reporting and avoiding scientific misconduct than control-arm trainees. CONCLUSION: Given the limited availability of RCR/HSP faculty, financial resources, and time in the surgical training schedule, the investigators recommend that academic authorities in Guatemala consider online training programs in RCR/HSP in all surgical residency programs as an affordable and scalable strategy to build ethical research skills in its surgical workforce. Investment in human resources to support in-person ethics education as a way to build self-efficacy in ethical decision-making should be considered. [ABSTRACT FROM AUTHOR]
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- 2024
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8. 'But, what is a researcher?' Developing a novel ethics resource to support informed consent with young children.
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Truscott, Julia and Benton, Laura
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Young children are generally unfamiliar with the notion of research, which can generate ethical discomfort when seeking their consent to participate in it. Taking informed consent with young children as a focus, in this viewpoint article we reflect on what it means for young children (aged approximately 3–8 years) to be 'informed' in the context of research participation. We then share the process of developing an interdisciplinary, innovative ethics video resource to enhance children's understanding of research, the researcher role and children's participation in research. To ensure the resource was understandable and engaging for young children, we drew on existing research literature and other supplementary resources as well as creative storytelling and consultation with children and parents. The animated video, which is freely available online, builds from young children's own experiences and questions with the aim of better supporting their understandings and upholding their rights through the informed consent process. [ABSTRACT FROM AUTHOR]
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- 2024
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9. Emerging ethical challenges in researching vulnerable groups during the COVID-19.
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Pelek, Deniz, Bortun, Vladimir, and Østergaard-Nielsen, Eva
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SOCIAL sciences , *MENTAL health , *AT-risk people , *CLIMATE change , *SEX distribution , *BIOETHICS , *ETHICS , *HUMAN rights , *COVID-19 pandemic , *RESEARCH ethics , *PSYCHOLOGICAL vulnerability , *SOCIAL classes - Abstract
This paper discusses the lasting impact of the Covid-19 pandemic on research ethics in social sciences by focusing on the concept of vulnerability. We unpack the current conceptualisations of vulnerability and their limitations and argue for the need to reconceptualise vulnerability as multidimensional, consisting of both universal and contextual dimensions, as well as their dynamic interplay. Multidimensional vulnerability is inspired by and relevant to social science research during the pandemic but can also be useful in other contexts such as climate change or conflict. The paper puts forwards several considerations about how this revised concept of vulnerability may be useful when evaluating ethical dimensions of social science research. [ABSTRACT FROM AUTHOR]
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- 2024
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10. Weighing the moral status of brain organoids and research animals.
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Koplin, Julian J.
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BIOLOGICAL models , *CONSCIOUSNESS , *LABORATORY animals , *BRAIN , *ANIMAL rights , *ETHICS , *RESEARCH ethics - Abstract
Recent advances in human brain organoid systems have raised serious worries about the possibility that these in vitro 'mini‐brains' could develop sentience, and thus, moral status. This article considers the relative moral status of sentient human brain organoids and research animals, examining whether we have moral reasons to prefer using one over the other. It argues that, contrary to common intuitions, the wellbeing of sentient human brain organoids should not be granted greater moral consideration than the wellbeing of nonhuman research animals. It does so not by denying that typical humans have higher moral status than animals, but instead by arguing that none of the leading justifications for granting humans higher moral status than nonhuman animals apply to brain organoids. Additionally, it argues that there are no good reasons to be more concerned about the well‐being of human brain organoids compared to those generated from other species. [ABSTRACT FROM AUTHOR]
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- 2024
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11. Why restrict medical effective altruism?
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Quigley, Travis
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ALTRUISM , *POLICY sciences , *BIOETHICS , *COVID-19 vaccines , *PATERNALISM , *WORLD health , *COVID-19 , *RESEARCH ethics , *HEALTH care rationing - Abstract
In a challenge trial, research subjects are purposefully exposed to some pathogen in a controlled setting, in order to test the efficacy of a vaccine or other experimental treatment. This is an example of medical effective altruism (MEA), where individuals volunteer to risk harms for the public good. Many bioethicists rejected challenge trials in the context of Covid‐19 vaccine research on ethical grounds. After considering various grounds of this objection, I conclude that the crucial question is how much harm research subjects can permissibly risk. But we lack a satisfying way of making this judgment that does not appeal simply to the intuitions of doctors or bioethicists. I consider one recent and structurally plausible approach to critically evaluating the harm question. Alex London defends a social consistency test for research risks: we should compare the risks undertaken by research subjects to relevantly similar risks which are accepted in other spheres of society. I argue there is no good reason not to consider volunteer military service as a relevant social comparison. This implies there is essentially no cap on acceptable risks on the social consistency rationale. In short, if soldiers can be heroes, why can't research volunteers? [ABSTRACT FROM AUTHOR]
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- 2024
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12. Dissociation mediates association between childhood trauma and distress from trauma research participation: analysis of pooled clinical data.
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Kim, Dongjoo, Kim, Daeho, and Kim, Eun Kyoung
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POST-traumatic stress disorder , *RISK assessment , *PEARSON correlation (Statistics) , *PSYCHOTHERAPY patients , *PSYCHOLOGICAL distress , *RESEARCH funding , *STRUCTURAL models , *HUMAN research subjects , *QUESTIONNAIRES , *STRUCTURAL equation modeling , *CHI-squared test , *DESCRIPTIVE statistics , *DISSOCIATIVE disorders , *ONE-way analysis of variance , *PSYCHOSES , *FACTOR analysis , *CONFIDENCE intervals , *DATA analysis software , *ADVERSE childhood experiences , *RESEARCH ethics , *PSYCHOSOCIAL factors - Abstract
Childhood trauma and post-traumatic stress disorder (PTSD) are risk factors for emotional distress from trauma-related research participation. The role of dissociation, however, has not been investigated. This study examined the mediation effect of dissociation and PTSD on the relationship between childhood trauma and distress in trauma studies. Pooled data of the Childhood Trauma Questionnaire, Impact of Events Scale-Revised, Dissociative Experiences Scale-Taxon, and Trauma Antecedents Questionnaire from 231 psychiatric patients (73% diagnosed with psychotic illnesses) at a psychiatric clinic in South Korea were analysed. We performed multiple mediation effect analysis to verify a structural model for distress in trauma-related questionnaires. Thirteen percent of participants reported distress after the survey. In the structural equation, the symptoms of PTSD did not show a significant relationship (p =.064). When the two parameters were included in the model, it was found that the direct effect of childhood trauma on distress was not significant (p =.43), but dissociation showed a direct effect on distress (p <.001). Childhood trauma affects distress through the sequential mediating effect of PTSD symptoms and dissociation. Dissociation should be considered as a significant contributor to distress from trauma research participation along with childhood trauma and PTSD. [ABSTRACT FROM AUTHOR]
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- 2024
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13. Doing ageing research in pandemic times: a reflexive approach towards research ethics during the COVID-19 pandemic.
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Galčanová Batista, Lucie, Urbaniak, Anna, and Wanka, Anna
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QUALITATIVE research , *GERIATRICS , *EMPIRICAL research , *INTERVIEWING , *HUMAN research subjects , *REFLECTION (Philosophy) , *THEORY of knowledge , *AGEISM , *RESEARCH ethics , *COVID-19 pandemic , *COVID-19 , *BEHAVIORAL research , *SOCIAL distancing , *PSYCHOLOGICAL vulnerability - Abstract
The outbreak of COVID-19 has had a significant impact on societies and individual lives across the globe. In this paper, we address the impact of the pandemic and the protective measures on empirical social scientific ageing research through the lens of 'ethically important moments'. One of the most crucial measures for preventing the spread of the virus includes social distancing; therefore, empirical research methods based on person-to-person direct contact (as in interviews) and first-hand observation have been scaled back since 2020. For ageing research, the challenges are particularly pronounced due to the ongoing discussion regarding vulnerabilities associated with higher age and age-based discrimination. Hence, many researchers focusing on ageing are facing some difficult questions: How and under what conditions can we carry on with empirical research without putting our research participants and ourselves at risk? Firstly, we systematically identify the key dimensions and challenges that have shaped social scientific research during the lockdowns associated with the COVID-19 pandemic: fragmentation, fluidity, ambiguity and uncertainty. Then, using insights from two international research projects, we illustrate and critically reflect on the ethically important moments and practical dilemmas that have resulted from these pandemic challenges when researching with and about older adults. [ABSTRACT FROM AUTHOR]
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- 2024
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14. Artificial Intelligence Augmented Qualitative Analysis: The Way of the Future?
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Hitch, Danielle
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LANGUAGE & languages , *DOCUMENTATION , *QUALITATIVE research , *DATA analysis , *ARTIFICIAL intelligence , *POST-acute COVID-19 syndrome , *NATURAL language processing , *THEMATIC analysis , *MACHINE learning , *RESEARCH ethics - Abstract
The artificial intelligence (AI) revolution is here and gathering momentum, thanks to new models of natural language processing (NLP) and rapidly increasing adoption by the public. NLP technology uses statistical analysis of language structures to analyse and generate human language, using text or speech as its source material. It can also be applied to visual mediums like images and videos. A few qualitative research early adopters are beginning to adopt this technology into their work, but our understanding of its potential remains in its infancy. This article will define and describe NLP-based AI and discuss its benefits and limitations for reflexive thematic analysis in health research. While there are many platforms available, ChatGPT is the most well-known and accessible. A worked example using ChatGPT to augment reflexive thematic analysis is provided to illustrate potential application in practice. This article is intended to inspire further conversation around the role of AI in qualitative research and offer practical guidance for researchers seeking to adopt this technology. [ABSTRACT FROM AUTHOR]
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- 2024
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15. Decentralised clinical trials in rural Australia: Opportunities and challenges.
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Walsh, Sandra, Dettwiller, Pascale, Puah, Lee, Beks, Hannah, Versace, Vincent, and Jones, Martin
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SOCIAL capital , *RURAL health , *DECENTRALIZATION in management , *ACADEMIC medical centers , *CLINICAL trials , *RESPONSIBILITY , *MEDICAL research , *MATHEMATICAL models , *QUALITY assurance , *PHYSICIANS , *THEORY , *HEALTH equity - Abstract
Aims: To present opportunities and a model to redress the under‐representation of rural communities and people in Australian clinical trials. Context: Clinical trials are essential for building and understanding the health evidence base. The lack of representation of rural people in clinical trials is evident in other countries. Examining the Australian New Zealand Clinical Trial Registry (ANZCTR) suggests this is also the case in Australia. Approach: We propose an approach that empowers rurally based academics and clinicians to co‐design clinical trials and increase rural Australians' participation in clinical trials to address this inequality of access. A case study of a decentralised, co‐designed clinical trial is presented to support this approach. Conclusion: Decentralising clinical trials could improve access to clinical trials, strengthen the social capital of rural communities and help address the health inequalities that exist between rural and metropolitan communities. [ABSTRACT FROM AUTHOR]
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- 2024
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16. Elevating disabled voices: Decentering power in school psychology scholarship.
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Talapatra, Devadrita, Snider, Laurel A., McCreadie, Kayla, and Cullen, Eileen
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POWER (Social sciences) , *SCHOLARLY method , *SOCIAL justice , *SELF-efficacy , *INTERPROFESSIONAL relations , *HUMAN research subjects , *PSYCHOLOGY , *INTELLECTUAL disabilities , *EXPERIENCE , *STUDENTS , *SOCIAL integration , *SPECIAL education schools , *EDUCATIONAL psychology , *STUDENT rights , *STUDENT attitudes , *SOCIAL support , *RESEARCH ethics - Abstract
People with intellectual disabilities (IDs) have experienced involuntary and inhumane research practices. Consequently, researchers have shifted towards excluding those with IDs; caregivers, teachers, or peers compose study samples, dominating a space they indirectly experience. Researcher bias regarding intellectual capacity has resulted in a unique research gap that overlooks insights from the population the research is intended to benefit. People with ID are interested in research participation and have a right to be included in decision-making that impacts them. Emancipatory inquiry allows school psychology scholars to center student voices while also promoting social justice. Emancipatory inquiry empowers the "subjects" of social inquiry by producing knowledge that directly benefits disenfranchised populations. Emancipatory inquiry aligns with the social justice frame of DisCrit, which compels us to privilege the voices of marginalized populations and recognize that many of the gains for disabled populations have largely occurred because of the benefits they afford White, able-bodied, middle-class citizens. Using Emancipatory inquiry, school psychology scholars can prepare trainees and future researchers to conduct ethically sound research, prioritize first-person voices of those with ID, provide socially valid services to students and their families, and move school psychology closer to partnership with the disabled community. [ABSTRACT FROM AUTHOR]
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- 2024
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17. Viewpoint On the ethics of researching informal urbanism.
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Kamalipour, Hesam and Peimani, Nastaran
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CITIES & towns , *RESEARCH ethics , *URBAN research , *RESEARCH personnel , *STREET vendors ,DEVELOPING countries - Abstract
Forms of informal urbanism, ranging from informal settlement to street vending and informal transport, have become integral to how places work across different contexts and scales. In this article, we reflect on the ethics of researching forms of urban informality, with a focus on the capacities and challenges associated with exploring informal urbanism, particularly in the context of what is considered the global South. By drawing on our experiences of investigating various forms of informality in different contexts, this article engages with ethical considerations that arise when researching informal urbanism. We argue that designing, conducting and disseminating research on forms of urban informality can pose critical ethical questions for researchers who not only strive to bring about positive change but must also exercise caution to avoid causing more harm than good by exposing individuals at risk of exploitation, eviction or displacement. [ABSTRACT FROM AUTHOR]
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- 2024
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18. Where is the past? Time in historical geography.
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Marković, Ivan
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HISTORICAL geography , *HUMAN geography , *RESEARCH ethics , *THEORY (Philosophy) , *PHILOSOPHY of history , *TEMPORAL databases - Abstract
Despite human geography's sophisticated analyses and overwhelming focus on space, time in its various guises has certainly not been absent in the literature. The same cannot be said for historical geography, which is particularly interesting as its main concern is purportedly with space and place in and across other times. In response, this paper examines the ontology and epistemology of time in "modern" historical geography since the early 2000s and does so in discussion with recent developments in theory and philosophy of history, specifically the notion of 'new presentism'. An idea which broadly posits that the past and the future do not exist as separate categories but are always projections of specific presents, they exist as the present's own immanent modes. This is achieved by adopting Robert Dodgshon's concept of the 'specious present' in order to (1) affirm, albeit on different epistemological grounds, the partiality, situatedness and contingency of historical geographies as well as the embodied and performative nature of archival labour; (2) offer an accessible conceptual tool in thinking about the role of time in the practice of future historical geography research; and finally (3) suggest that thinking historical geography as a practice in and through the 'specious present' makes questions of ethics, accountability, and politics of knowledge production both central and inevitable, as opposed to just being examples of "good practice" or worse still, being completely sidestepped by virtue of an imagined spatio-temporal distance between the bygone past and the present moment of research. • Examines the ontology and epistemology of time in the subdiscipline of human geography. • Provides an explanation for the field's lack of engagement with time in its investigations. • Offers a onto-epistemic framework for incorporating the specious present in historical-geographical practice. [ABSTRACT FROM AUTHOR]
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- 2024
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19. Defining Malaysia's health research ethics system through a stakeholder driven approach.
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Tackett, Sean, Ng, Chirk Jenn, Sugarman, Jeremy, Daniel, Esther Gnanamalar Sarojini, Gopalan, Nishakanthi, Tivyashinee, Tivyashinee, Kamarulzaman, Adeeba, and Ali, Joseph
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RESEARCH ethics , *PUBLIC value , *PUBLIC health research , *ETHICS committees , *HUMAN research subjects - Abstract
The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value to society; and defining standards for HRE oversight. Internal actors with the greatest potential for more influence were: the national network of research ethics committees; noninstitution-based research ethics committees; and research participants. The World Health Organization, an external actor, had the largest untapped potential for influence overall. In summary, this stakeholder-driven process identified HRE system functions and actors that could be targeted to increase HRE system capacity. [ABSTRACT FROM AUTHOR]
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- 2024
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20. In control or at the mercy of others? Navigating power dynamics in online data collection with UK secondary school students.
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Kim, Chae-Young
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SECONDARY school students , *COVID-19 pandemic , *RESEARCH ethics , *PARTICIPANT observation - Abstract
Research involving young people is a challenging process that requires managing relationships with diverse individuals and groups, including the young participants and their various gatekeepers. While it is normally assumed that the researcher is in overall control of their research, by using a Foucauldian conception of 'power as effects' that operate in the form of relations and through discourse as the articulation of norms, this paper discusses how, in practice, the researcher can lose control over their research and so be forced into making substantial compromises concerning the nature and extent of the data they can collect. I do this by reflecting on my experience of conducting research involving UK secondary school students using online data collection methods during the Covid-19 pandemic. I identify several factors that generated power effects which influenced the conduct of the research, including: an ethics review that relied on a simplistic discourse concerning young participants' (in)competence; my own self-regulation of my conduct in respect of 'ethical' research; my 'positionality' in the field; and a researcher's general dependence on participants and gatekeepers to complete their research. I conclude by reflecting on how these factors may impact upon the conditions for viable social research involving young people. [ABSTRACT FROM AUTHOR]
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- 2024
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21. Embracing prospects for reducing the numbers of animals used in aquaculture research.
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Lazado, Carlo C., Ytteborg, Elisabeth, and Noble, Chris
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The principles of three Rs—REPLACEMENT, REDUCTION, and REFINEMENT—govern the protection and use of animals, including fish, for research purposes in the European Union and Norway. In this paper, we discuss some straightforward steps to simplify the delivery of these principles at the idea stage and adapt some of these examples for conducting fish trials related to health and welfare. Although some of the approaches are well established in other animal science arenas, we believe there can be a timely recap of their key facets. We discuss a number of simple strategies to emphasize how a reduction in fish numbers can be achieved from initial project conception to implementation, highlighting not only their advantages but also their limitations. We also highlight the role that funding agencies can play in the implementation of the 3R principles in aquaculture research. These simple points can be used in frameworks to initiate a broader and dynamic intersectoral dialogue among stakeholders of aquaculture research on how to promote ethics and embrace opportunities for this within the tenets of the 3Rs. [ABSTRACT FROM AUTHOR]
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- 2024
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22. ARTIFICIAL INTELLIGENCE AND MUSICKING: A PHILOSOPHICAL INQUIRY.
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BERKOWITZ, ADAM ERIC
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GENERATIVE artificial intelligence , *ARTIFICIAL intelligence , *FAIR use (Copyright) , *DIGITAL rights management , *EXISTENTIALISM , *CUSTOMER relationship management , *RESEARCH ethics - Abstract
ARTIFICIAL INTELLIGENCE (AI) DEPLOYED FOR customer relationship management (CRM), digital rights management (DRM), content recommendation, and content generation challenge longstanding truths about listening to and making music. CRM uses music to surveil audiences, removes decision-making responsibilities from consumers, and alters relationships among listeners, artists, and music. DRM overprotects copyrighted content by subverting Fair Use Doctrine and privatizing the Public Domain thereby restricting human creativity. Generative AI, often trained on music misappropriated by developers, renders novel music that seemingly represents neither the artistry present in the training data nor the handiwork of the AI's user. AI music, as such, appears to be produced through AI cognition, resulting in what some have called ''machine folk'' and contributing to a ''culture in code.'' A philosophical analysis of these relationships is required to fully understand how AI impacts music, artists, and audiences. Using metasynthesis and grounded theory, this study considers physical reductionism, metaphysical nihilism, existentialism, and modernity to describe the quiddity of AI's role in the music ecosystem. Concluding thoughts call researchers and educators to act on philosophical and ethical discussions of AI and promote continued research, public education, and democratic/ laymen intervention to ensure ethical outcomes in the AI music space. [ABSTRACT FROM AUTHOR]
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- 2024
23. Cross-border data sharing through the lens of research ethics committee members in sub-Saharan Africa.
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Cengiz, Nezerith, Kabanda, Siti M., and Moodley, Keymanthri
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DIGITAL technology , *INFORMATION sharing , *RESEARCH ethics , *ETHICS committees , *LEGAL ethics , *DATA protection laws - Abstract
Background: Several factors thwart successful data sharing—ambiguous or fragmented regulatory landscapes, conflicting institutional/researcher interests and varying levels of data science-related expertise are among these. Traditional ethics oversight mechanisms and practices may not be well placed to guarantee adequate research oversight given the unique challenges presented by digital technologies and artificial intelligence (AI). Data-intensive research has raised new, contextual ethics and legal challenges that are particularly relevant in an African research setting. Yet, no empirical research has been conducted to explore these challenges. Materials and methods: We explored REC members' views and experiences on data sharing by conducting 20 semi-structured interviews online between June 2022 and February 2023. Using purposive sampling and snowballing, we recruited representatives across sub-Saharan Africa (SSA). We transcribed verbatim and thematically analysed the data with Atlas.ti V22. Results: Three dominant themes were identified: (i) experiences in reviewing data sharing protocols, (ii) perceptions of data transfer tools and (iii) ethical, legal and social challenges of data sharing. Several sub-themes emerged as: (i.a) frequency of and approaches used in reviewing data sharing protocols, (i.b) practical/technical challenges, (i.c) training, (ii.a) ideal structure of data transfer tools, (ii.b) key elements of data transfer tools, (ii.c) implementation level, (ii.d) key stakeholders in developing and reviewing a data transfer agreement (DTA), (iii.a) confidentiality and anonymity, (iii.b) consent, (iii.c) regulatory frameworks, and (iii.d) stigmatisation and discrimination. Conclusions: Our results indicated variability in REC members' perceptions, suboptimal awareness of the existence of data protection laws and a unanimously expressed need for REC member training. To promote efficient data sharing within and across SSA, guidelines that incorporate ethical, legal and social elements need to be developed in consultation with relevant stakeholders and field experts, along with the training accreditation of REC members in the review of data-intensive protocols. [ABSTRACT FROM AUTHOR]
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- 2024
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24. Intrusiveness and the Public-private Divide in Netnography: A Situated, Structured Approach for Ethical Research in the Context of Closed, Group-based, or Hidden Social Media Behaviour.
- Author
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Demant, Jakob and Moretti, Alessandro
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- *
DIGITAL technology , *SOCIAL media , *MEMES , *ETHNOLOGY research , *RESEARCH ethics , *DIGITAL humanities , *RESEARCH personnel - Abstract
The nature of online social behaviour is largely changing, from communications taking place on open platforms to interactions occurring in hidden, group-based spaces or closed fora. Boccia Artieri (2017) has called this the new geography of unsearchable small conversations. This transformation challenges our current understanding and application of research ethics in qualitative digital sociology because, on one hand, we can no longer lean upon the approaches used by social data science to handle big and open data and, on the other, we cannot exclusively rely on established practices in qualitative sociology. Academic inquiry into these closed messaging threads and fora, however, remains of great societal importance, not least because of the rise of hate and extreme content in such spaces. With researchers now facing increased barriers when accessing social media (such as having to register an account, the inability to enter a group or chat without being invited, and so on), a rethinking of some of the long-standing cornerstones of ethical research is required for the digital age. The paper makes a methodological contribution to this field by delivering an assessment tool based on the methodology of the project Online Hateful Youth Sociality, which explores the use of memes to share hate on social media. The tool bridges the perspectives of digital sociology, criminology, and digital humanities with ethnographic real-world research to address the ethical issues of disclosure and intrusiveness, harm, the public or private nature of online spaces, and informed consent in the context of researching behaviour in small and hard-to-reach online groups. The assessment tool is presented in the form of an ethical decision flowchart that advocates for an approach that is not only situated but also structured. Ethical considerations are thus applied to the relevant issues depending on specific contexts but with clear, "step-by-step" assessment guidance. [ABSTRACT FROM AUTHOR]
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- 2024
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25. Epistemic appropriation and the ethics of engaging with trans community knowledge in the context of mental healthcare research.
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Myerscough, Francis, Schneider-Reuter, Lydia, and Faissner, Mirjam
- Subjects
- *
TRANSGENDER communities , *CONSCIOUSNESS raising , *MEDICAL personnel , *ATTRIBUTION of authorship , *TRANSGENDER people , *TRANSPERSONAL psychology - Abstract
Mental healthcare research increasingly focuses the needs of trans people and, in doing so, acknowledges knowledge and epistemic resources developed in trans communities. In this article, we aim to raise awareness of an ethical issue described by Emmalon Davis that may arise in the context of engaging with community knowledge and epistemic resources: the risk of epistemic appropriation. It is composed of two harms (1) a detachment of epistemic resources developed in the originating community and (2) a misdirection of these epistemic resources for epistemic goals of a dominant community. In this article, we map and discuss the ethical concerns in using knowledge originating in trans communities in terms of epistemic appropriation in the context of mental healthcare research. We first argue that misgendering, failing to reference non-academic sources and a lack of attribution in community authorship are forms of epistemic detachment. Second, we problematize cases of epistemic misdirection of trans epistemic resources, focusing on the examples of detransition and transition regret. We discuss harms related to epistemic appropriation in relationship to risks to safety. The article aims to raise awareness about the risk of epistemic appropriation both in researchers engaging with trans knowledge as well as in mental healthcare workers who seek information on trans. [ABSTRACT FROM AUTHOR]
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- 2024
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26. Protection of Participants in Community-Engaged Research by Institutional Review Boards: A Call for Action.
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Windsor, Liliane, Benoit, Ellen, Kwan, Patchareeya, Tan, Kevin, and Richmond, Al
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- *
SAFETY , *COMMUNITY support , *COMMUNITY health services , *TEAMS in the workplace , *HUMAN research subjects , *PRIVACY , *BIOETHICS , *INSTITUTIONAL review boards , *MEDICAL research , *ACQUISITION of data , *ETHICS committees , *TRUST , *RESEARCH ethics , *GOVERNMENT regulation , *MEDICAL ethics - Abstract
The article presents a study which identified challenges encountered at the institutional review boards-community-engaged research (IRB-CEnR) interface and delineated actions to better align human participant protections with CEnR principles. Topics discussed include the common rule and institutional review board origins, community-engaged research principles and data gathering, and interface adaptations.
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- 2024
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27. Putting the auto in ethnography: The embodied process of reflexivity on positionality.
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Morrow, Felicity and Kettle, Martin
- Subjects
- *
SOCIAL workers , *INTERPROFESSIONAL relations , *MEDICAL personnel , *ETHNOLOGY research , *ETHNOLOGY , *SOCIAL worker attitudes , *PARTICIPANT-researcher relationships , *REFLEXIVITY , *SOCIAL work research , *RESEARCH methodology , *CONTENT mining , *EXPERTISE , *INTERPERSONAL relations , *COVID-19 pandemic , *RESEARCH ethics - Abstract
This article describes an unexpected methodological shift made in response to the COVID-19 pandemic during doctoral research, and exemplifies reflexivity in action whilst negotiating my complex positionality as both a researcher and a social worker. The first UK national lockdown was announced after I had conducted 3 months of ethnographic data collection in a local authority adult social work team, thus halting my research. As society shut down, face-to-face research was paused overnight, however, the local authority continued to provide essential services and support. Forging a path forward, I successfully gained a job practising as a social worker within the team and completed a supplementary ethics application to include auto-ethnographic data which would complement the existing ethnography. Although practicing reflexivity and analysing positionality are established and encouraged parts of ethnographic research, how a researcher actively conducts them varies and usually remains unseen. Methodologies are often presented in a sanitised and polished manner, depriving the reader of the messy yet informative reality of research. This article draws upon fieldnotes to practically illustrate and bring this reflexivity on positionality to the fore. As I move from participant-observer to complete-participant, the findings zoom in on my experience of navigating positionality, revealing a micro picture of the details and subtleties of this process. This unexpected research journey enhanced my level of intimacy with the phenomenon, the research site, and the participants. Overall, this example of enacting reflexivity helps to bridge the gap between how positionality is theorised and how it actively practiced. Finally, this article is a call for more open, deeper, and continual reflexivity on our positionality as researchers. [ABSTRACT FROM AUTHOR]
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- 2024
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28. John Charlton Polkinghorne, 1930–2021.
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Fairlie, David
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- *
SCATTERING amplitude (Physics) , *CAREER changes , *MATHEMATICS students , *COMPLEX variables , *RESEARCH ethics - Abstract
John Charlton Polkinghorne was very successful in two careers: as a theoretical physicist and as a theologian. As a physicist at Cambridge, he was one of the pioneers of applying complex variable theory to the study of properties of scattering amplitudes and contributed to the theory of strong (nuclear) interactions. In addition, he was a successful teacher, with many of his students gaining senior academic positions in universities. A postmaster's son from Weston‐super‐Mare, he married Ruth Martin, also a mathematics student at Cambridge. They had three children. John surprised many, apart from those who knew him closely, by resigning from his Chair at Cambridge to study for ordination in the Anglican Church. He became an influential theologian devoting much study to the interaction of science and religion. His position might be summed up in a phrase he was fond of, "God holds the Universe in being", which was John's solution to what is called the fine‐tuning problem in physics: that the parameters of Nature turn out to be exquisitely adjusted to allow our universe to exist in its richness. John was a formidable administrator, became President of Queens' College, Cambridge, and chaired UK government committees on research ethics. [ABSTRACT FROM AUTHOR]
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- 2024
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29. First-in-Human Whole-Eye Transplantation: Ensuring an Ethical Approach to Surgical Innovation.
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Laspro, Matteo, Thys, Erika, Chaya, Bachar, Rodriguez, Eduardo D., and Kimberly, Laura L.
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PATIENT selection , *FACIAL transplantation , *RISK assessment , *VISION disorders , *TRANSPLANTATION of organs, tissues, etc. , *DIFFUSION of innovations , *PATIENTS , *GROUP identity , *IMMUNOSUPPRESSIVE agents , *HOMOGRAFTS , *BIOETHICS , *ATTITUDE (Psychology) , *SURGICAL complications , *QUALITY of life , *SOCIAL support , *SOCIAL stigma , *DISEASE risk factors ,PREVENTION of surgical complications ,EYE transplantation - Abstract
As innovations in the field of vascular composite allotransplantation (VCA) progress, whole-eye transplantation (WET) is poised to transition from non-human mammalian models to living human recipients. Present treatment options for vision loss are generally considered suboptimal, and attendant concerns ranging from aesthetics and prosthesis maintenance to social stigma may be mitigated by WET. Potential benefits to WET recipients may also include partial vision restoration, psychosocial benefits related to identity and social integration, improvements in physical comfort and function, and reduced surgical risk associated with a biologic eye compared to a prosthesis. Perioperative and postoperative risks of WET are expected to be comparable to those of facial transplantation (FT), and may be similarly mitigated by immunosuppressive protocols, adequate psychosocial support, and a thorough selection process for both the recipient and donor. To minimize the risks associated with immunosuppressive medications, the first attempts in human recipients will likely be performed in conjunction with a FT. If first-in-human attempts at combined FT-WET prove successful and the biologic eye survives, this opens the door for further advancement in the field of vision restoration by means of a viable surgical option. This analysis integrates recent innovations in WET research with the existing discourse on the ethics of surgical innovation and offers preliminary guidance to VCA programs considering undertaking WET in human recipients. [ABSTRACT FROM AUTHOR]
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- 2024
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30. Challenges for Political Science Research Ethics in Autocracies: A Case Study of Central Asia.
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Collins, Neil, Sharplin, Elaine, and Burkhanov, Aziz
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- *
RESEARCH ethics , *DICTATORSHIP , *DEMOCRACY , *POLITICAL scientists , *DILEMMA - Abstract
The imperative to conduct research ethically has been firmly established. Biomedical and applied research in the Global North has dominated the development of an ethical framework based on four broad principles: respect for autonomy, non-maleficence, beneficence and justice. The prevailing research ethics can become significant constraints to political scientists focussing on non-democratic settings. The appropriateness of these codes in guiding political scientists' research, especially in authoritarian contexts of Central Asia, is examined. The article outlines the need for a more culturally and contextually nuanced approach to research ethics and an understanding of the discipline-specific ethical dilemmas for researchers within political science. [ABSTRACT FROM AUTHOR]
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- 2024
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31. Establishing a Pediatric Health Equity, Diversity, and Inclusion Research Review Process.
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Katz-Wise, Sabra L., Shah, Snehal N., Melvin, Patrice, Boskey, Elizabeth R., Grice, Amanda W., Kornetsky, Susan, Young Poussaint, Tina, Whitley, Melicia Y., Stack, Anne M., Emans, S. Jean, Hoerner, Benjamin, Horgan, James J., and Ward, Valerie L.
- Subjects
- *
CHILDREN'S health , *MEDICAL protocols , *DIVERSITY & inclusion policies , *ACADEMIC medical centers , *HUMAN research subjects , *PEDIATRICS , *MEDICAL research , *MATHEMATICAL models , *THEORY , *RESEARCH ethics - Abstract
Equity, diversity, and inclusion (EDI) research is increasing, and there is a need for a more standardized approach for methodological and ethical review of this research. A supplemental review process for EDI-related human subject research protocols was developed and implemented at a pediatric academic medical center (AMC). The goal was to ensure that current EDI research principles are consistently used and that the research aligns with the AMC's declaration on EDI. The EDI Research Review Committee, established in January 2022, reviewed EDI protocols and provided recommendations and requirements for addressing EDI-related components of research studies. To evaluate this review process, the number and type of research protocols were reviewed, and the types of recommendations given to research teams were examined. In total, 78 research protocols were referred for EDI review during the 20-month implementation period from departments and divisions across the AMC. Of these, 67 were given requirements or recommendations to improve the EDI-related aspects of the project, and 11 had already considered a health equity framework and implemented EDI principles. Requirements or recommendations made applied to 1 or more stages of the research process, including design, execution, analysis, and dissemination. An EDI review of human subject research protocols can provide an opportunity to constructively examine and provide feedback on EDI research to ensure that a standardized approach is used based on current literature and practice. [ABSTRACT FROM AUTHOR]
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- 2024
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32. Ethics reviews in the European Union. Implications for the governance of scientific research in times of data science and Artificial Intelligence.
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Casiraghi, Simone and van Dijk, Niels
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- *
ARTIFICIAL intelligence , *DATA science , *DATA protection laws , *NETWORK governance , *ETHICS , *RESEARCH personnel - Abstract
This article builds on discussions on peer review in science and the role of ethics in the governance of technologies to achieve a two-fold goal. First, it shows the process of co-production of the European Commission's (EC's) standardised 'ethics appraisal process' with the development of the EC's Framework Programmes (FPs), by looking at the standardisation of the process and the mutual shaping of data protection law and risk-based discourses around Artificial Intelligence. Second, it investigates the political and epistemic implications arising from this process for the EU governance of scientific research regarding (1) sponsorship of science and technology by the EU and (2) how many limitations or constraints researchers have in practice when carrying out their research. After sketching the origins of the ethics appraisal process and its co-production with data protection law and risk-based jargon, the article outlines the implications for the governance of scientific research and draws recommendations. [ABSTRACT FROM AUTHOR]
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- 2024
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33. Nature and causes of questionable research practice and research misconduct from a philosophy of science perspective.
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Tang, Bor Luen
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- *
MEDICAL illustration , *PHILOSOPHY , *MOTIVATION (Psychology) , *MEDICAL research , *FRAUD in science , *RESEARCH ethics - Abstract
Misconduct in science is often viewed and analyzed through the lenses of normative ethics and moral philosophy. However, notions and methods in the philosophy of science could also provide rather penetrative explanatory insights into the nature and causes of scientific misconduct. A brief illustration in this regard, using as examples the widely popular Popperian falsification and the Kuhnian scientific paradigm, is provided. In multiple areas of scientific research, failure to seek falsification in a Popperian manner constitutes a questionable research practice and could lead to "falsification" in the context of research misconduct. On the other hand, scientific misconduct is often facilitated by its perpetrators using the familiarity, expectations and confines of a Kuhnian paradigm to blend in fabricated data/results. A rudimentary application of these philosophical notions could be useful in our understanding of the nature and cause of research misconduct, and facilitate mitigation of the latter through educational means. [ABSTRACT FROM AUTHOR]
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- 2024
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34. The blind obedience of others: a better than average effect in a Milgram-like experiment.
- Author
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Bègue, Laurent and Vezirian, Kevin
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- *
SOCIAL psychology , *TASK performance , *RESEARCH funding , *DEATH , *FISHES , *EXPERIMENTAL design , *RESEARCH methodology , *SOCIAL comparison , *SELF-perception , *RESEARCH ethics , *COGNITION - Abstract
In two highly powered studies (total N = 1617), we showed that individuals estimated that they would stop earlier than others in a Milgram-like biomedical task leading to the death of an animal, confirming the relevance of the Better than Average Effect (BTAE) in a new research setting. However, this effect was not magnified among participants displaying high self-esteem. We also showed that participants who already knew obedience studies expected that others would be more obedient and would administer more damaging treatment to the target. However, knowledge of Milgram's studies was unrelated to a higher estimate of their own behavior (study 1), and was even linked to the prediction that they would stop earlier (study 2, preregistered). Despite the wide educational use of Milgram's studies to increase people's awareness of the risks inherent to blind obedience, it may be that this knowledge only serves to evaluate other's behaviors, and not oneself. [ABSTRACT FROM AUTHOR]
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- 2024
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35. Migration information infrastructures: power, control and responsibility at a new frontier of migration research.
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Meissner, Fran and Taylor, Linnet
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- *
EMIGRATION & immigration , *SOCIAL responsibility , *BIG data , *CELL phones , *RESEARCH ethics - Abstract
The nature and production of migration statistics are in flux. State bureaucracies are no longer the primary source of migration data. Instead, there are a myriad unofficial data sources and processing collaborations which produce migration and mobility data as a by-product of both commercial and governmental processes. This has implications both for international processes of migration assessment and control, and for states' domestic policies with respect to migrants. This paper brings together migration studies with Science and Technology Studies (STS) literature to take stock of these new data sources' theoretical and empirical implications for both migrants and the links between migration and broader social processes. We identify migration information infrastructures: configurations of data assemblages which involve private and public sector actors, where data originally collected for one purpose (billing customers, sharing social information, sensing environmental change) become repurposed as migration statistics. We explore the implications of such migration information infrastructures for migration researchers: what are the entanglements that such infrastructures bring with them, and what do they mean for the ethics and practicalities of doing migration research? [ABSTRACT FROM AUTHOR]
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- 2024
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36. ‘Grimpact’: psychological researchers should do more to prevent widespread harm.
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Zivony, Alon
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- *
RESEARCH personnel , *KILLINGS by police , *RESEARCH ethics , *SOCIAL scientists , *SOCIAL groups - Abstract
The article discusses the need for psychological researchers to consider wider ethical guidelines for socially responsible science. It highlights the potential harm that studies can have on society, even if they are methodologically sound. The article presents examples of retracted papers that promoted stigmatizing or harmful ideas and argues that current guidelines for retraction do not address negative impacts. It also discusses a controversial ethical guideline proposed by the journal Nature Human Behavior, which suggests that some studies should not be published or retracted even if they are methodologically sound. The article concludes by offering recommendations for researchers to improve their decision-making and be more socially responsible in their work. [Extracted from the article]
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- 2024
37. The participant’s voice: crowdsourced and undergraduate participants’ views toward ethics consent guidelines.
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Stirling, Nadine S. J. and Takarangi, Melanie K. T.
- Abstract
The informed consent process presents challenges for psychological trauma research (e.g. Institutional Review Board [IRB] apprehension). While previous research documents researcher and IRB-member perspectives on these challenges,
participant views remain absent. Thus, using a mixed-methods approach, we investigated participant views on consent guidelines in two convenience samples: crowdsourced (N = 268) and undergraduate (N = 265) participants. We also examined whether trauma-exposure influenced participant views. Overall, participants were satisfied with current guidelines, providing minor feedback and ethical reminders for researchers. Moreover, participant views for consent were similar irrespective of trauma-exposure. Our study has implications for IRBs and psychological researchers. [ABSTRACT FROM AUTHOR]- Published
- 2024
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38. Research ethics review during the COVID-19 pandemic: An international study.
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Salamanca-Buentello, Fabio, Katz, Rachel, Silva, Diego S., Upshur, Ross E. G., and Smith, Maxwell J.
- Subjects
- *
COVID-19 pandemic , *RESEARCH ethics , *RESEARCH protocols , *HIGH-income countries , *MIDDLE-income countries , *COVID-19 - Abstract
Research ethics review committees (ERCs) worldwide faced daunting challenges during the COVID-19 pandemic. There was a need to balance rapid turnaround with rigorous evaluation of high-risk research protocols in the context of considerable uncertainty. This study explored the experiences and performance of ERCs during the pandemic. We conducted an anonymous, cross-sectional, global online survey of chairs (or their delegates) of ERCs who were involved in the review of COVID-19-related research protocols after March 2020. The survey ran from October 2022 to February 2023 and consisted of 50 items, with opportunities for descriptive responses to open-ended questions. Two hundred and three participants [130 from high-income countries (HICs) and 73 from low- and middle-income countries (LMICs)] completed our survey. Respondents came from diverse entities and organizations from 48 countries (19 HICs and 29 LMICs) in all World Health Organization regions. Responses show little of the increased global funding for COVID-19 research was allotted to the operation of ERCs. Few ERCs had pre-existing internal policies to address operation during public health emergencies, but almost half used existing guidelines. Most ERCs modified existing procedures or designed and implemented new ones but had not evaluated the success of these changes. Participants overwhelmingly endorsed permanently implementing several of them. Few ERCs added new members but non-member experts were consulted; quorum was generally achieved. Collaboration among ERCs was infrequent, but reviews conducted by external ERCs were recognized and validated. Review volume increased during the pandemic, with COVID-19-related studies being prioritized. Most protocol reviews were reported as taking less than three weeks. One-third of respondents reported external pressure on their ERCs from different stakeholders to approve or reject specific COVID-19-related protocols. ERC members faced significant challenges to keep their committees functioning during the pandemic. Our findings can inform ERC approaches towards future public health emergencies. To our knowledge, this is the first international, COVID-19-related study of its kind. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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39. In Pursuit of Ethical and Inclusive Research: What Ethics Committees and Disability Researchers Can Learn From Each Other.
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Walsh, Megan, Stead, Victoria, Sawyer, Susan M., O'Shea, Amie, Watson, Joanne M., and Anderson, Kate L. M.
- Subjects
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RESEARCH personnel , *ETHICS committees , *INCLUSION (Disability rights) , *YOUNG adults , *MEANS of communication for people with disabilities , *CHILDREN with intellectual disabilities , *CHILDREN with disabilities - Abstract
Across disciplines, qualitative researchers have documented epistemological and practical tensions in the ethical review of community-based and participatory research, with many arguing that ethics committees' decisions perpetuate the exclusion of marginalised communities from research engagement. In the existing literature, the research team and the ethics committee are often characterised as staunch opponents. Conversely, in our recent qualitative research addressing communication about sexuality with young people with cerebral palsy who use communication methods other than speech (augmentative and alternative communication), we found that constructive collaboration between researchers and committee members yielded novel insights. Co-authored by a multi-disciplinary research team and the former chair of a Human Research Ethics Committee, this reflexive case study identified three key tensions which arose in the ethical review of research involving this purportedly marginalised population, which reflected the wider importance of trust. We propose a series of practical recommendations to support productive collaboration in the pursuit of safe, inclusive and community-driven research. Plain language summary: Introduction: In Australia, researchers follow rules and policies to make sure their research is safe, fair, and correct. Before a research project starts, a group of experts called an ethics committee checks the researchers' plan, to make sure it is safe. Sometimes, ethics committees are worried that people with a disability could be hurt or upset by a research project. To protect people with a disability, ethics committees may say: • that the research activities need to change, or • that children with disability or people with intellectual disability can't participate in the research, or • that other people (e.g., a parent or guardian) should always give their permission for the person with a disability to participate. Sometimes these changes are sensible and safe. But sometimes they make research unfair or hard to access for people with a disability. This is frustrating when a research plan has been designed by people with a disability, or by people who know them well. What We Did: We did research with young people who have cerebral palsy who use methods other than speech to communicate (like gestures, communication books, or communication devices). Our research was about private topics like relationships and sex. When we applied to do our research, the ethics committee had lots of concerns. They asked us to change a lot of things. They even asked us to change some of the things that people with disability told us they wanted or needed. It was a long and frustrating process. We talked with the leader of the ethics committee and decided to write this article together. We wanted to help other researchers, ethics committees, and people with disabilities to work better together. What We Found: It is important that people with a disability be included in research that is fair and safe. Ethics committees have a big responsibility to keep people safe, but the experts who work on an ethics committee may not know a lot about disability. Stories and videos of people with disabilities participating in research can help the ethics committee to understand what is possible. Ethics committees can also talk to people with a disability, to learn more about their research needs and experiences. All research participants with a disability are unique. Every person will have different risks and different needs. Some people will have more than one accessibility need. For example, a young person with physical disability like cerebral palsy may also have difficulty reading and may not use speech to communicate. When ethics paperwork asks about each need separately, it can be hard to explain how a person with a lot of access needs will be supported. When research participants have complex needs, ethics committees can feel confused and worried. If this happens, they should have a conversation with the researchers about it, instead of saying "no" to the research. Sometimes researchers want to use special or creative research methods to involve people with disabilities. These need to be explained clearly, so the ethics committee can trust that they are safe. Researchers and ethics committees can also use research rules and resources that are created for, and by, people with a disability. These are written by large organisations like the International Association for the Scientific Study of Intellectual and Developmental Disabilities (https://iassidd.org/). By following these steps, we think that research can be safer and more inclusive for everyone. Contact: If you want more information about this article, you can email Megan Walsh at mcwalsh@deakin.edu.au. [ABSTRACT FROM AUTHOR]
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- 2024
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40. Birds of a feather (don't always) flock together: Critical reflexivity of 'Outsiderness' as an 'Insider' doing qualitative research with one's 'Own People'.
- Author
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Ademolu, Edward
- Subjects
- *
DOCUMENTATION , *QUALITATIVE research , *PARTICIPANT-researcher relationships , *REFLECTION (Philosophy) , *COMMUNITIES , *REFLEXIVITY , *RACE , *DIASPORA , *CONCEPTUAL structures , *RESEARCH ethics - Abstract
The article presents self-reflexive elaborations of negotiating 'outsider' positionalities as an 'insider' conducting a qualitative study of first-and-second-generation Nigerian diaspora communities in London, United Kingdom (UK) and the implications of this for the methodological documentation and interpretation of the research process as well as, the perspicuity of participants' realities. Within the conceptual framing of 'critical reflexivity', this article details the author's retrospective evaluation of the impact that his positionality – notably his outsiderness, and the biases, presuppositions and awkwardness accompanying this had at each stage of the research proccess. From formulating the research topic, methodological design and participant identification/recruitment, to data collection and analysis, this article reiterates the centrality of researcher reflexivity in qualitative inquiries of one's 'own people'. It concludes that while critical reflexivity affords a sensitivity and attention to challenges around methodological rigour and ethical research, ethnoracialised sameness between researchers and their supposed 'own people' is not always complementary, ideal and productive. This article makes important and original contributions to positionality debates in its specific application to the Nigerian diaspora advancing Black scholarship in the social sciences. [ABSTRACT FROM AUTHOR]
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- 2024
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41. Ethical challenges in participatory research with children and youth.
- Author
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Loveridge, Judith, Wood, Bronwyn Elisabeth, Davis-Rae, Eddy, and McRae, Hiria
- Subjects
- *
ADOLESCENT development , *FEMINISM , *PARTICIPANT-researcher relationships , *ACTION research , *CHILD development , *RESEARCH methodology , *INFORMED consent (Medical law) , *MEDICAL research , *RESEARCH ethics - Abstract
The growth of relational, participatory, collaborative and emergent research approaches in recent years has brought new ethical challenges for research with children and youth. These approaches require greater consideration of the specific social and cultural contexts of the research, along with the greater emphasis on researcher–participant relationships that often occur over sustained periods of time. Very few tools are available to help researchers think through the everyday ethical dilemmas such research can raise. In this article, we review the theoretical underpinnings of feminist and indigenous research methodologies that have encouraged these emerging approaches. Through examining an 18-month Youth Participatory Action Research (YPAR) project case study, we critically review ethical moments relating to negotiating consent over a sustained period of time, enhancing co-design and navigating power issues between adult and youth researchers. We conclude with a number of questions to 'think with' when reflecting on ethical research with children and youth. [ABSTRACT FROM AUTHOR]
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- 2024
- Full Text
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42. Why do people participate in research interviews? Participant orientations and ethical contracts in interviews with victims of interpersonal violence.
- Author
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Bredal, Anja, Stefansen, Kari, and Bjørnholt, Margunn
- Subjects
- *
VIOLENCE , *SEX crimes , *RESEARCH funding , *QUALITATIVE research , *INTIMATE partner violence , *INTERVIEWING , *HUMAN research subjects , *CRIME victims , *INTERPERSONAL relations , *COMPARATIVE studies - Abstract
Researchers are increasingly interested in why people want to participate in qualitative interview studies, particularly what they hope to gain from participating. The present paper contributes to this research agenda by analysing the motivations of victims of interpersonal violence: a group that is considered ethically challenging to involve in research, given their history of being intruded upon. The analysis is based on 174 qualitative interviews from three separate studies: two on intimate partner violence and one on sexual assault. A key finding is that many victims welcome the opportunity to participate and often use the interviews for their own purposes. We identified three different 'participant orientations', or ways victims relate to the interview and the research, including 'telling for oneself', 'telling for others' and 'telling for the researcher'. We discuss how these orientations imply different ethical contracts between the participant and researcher and their links to recruitment methods. [ABSTRACT FROM AUTHOR]
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- 2024
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43. Giving back and the moral logics of economic relations.
- Author
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Russell, Ian
- Subjects
- *
RECOGNITION (Psychology) , *WORK , *SOCIOECONOMIC factors , *FIELDWORK (Educational method) , *DECISION making in clinical medicine , *ETHICS , *PRACTICAL politics , *RESEARCH ethics , *EXPERIENTIAL learning - Abstract
This paper uses David Graeber's work on the moral grounds of economic relations as a vantage point from which to reflect on the ethics of giving back in field research, drawing on my own fieldwork experiences in Sierra Leone and Sri Lanka as well as examples from existing literature. I argue that Graeber's exposition of different moral logics for economic relations – hierarchy, exchange and communism – provides a valuable set of conceptual distinctions for thinking through what is owed by, and to, researchers in different research interactions. In addition to a recognition of the incommensurability of what is often being exchanged, this approach responds to the danger of researchers setting the terms of ethical interaction, through distant institutional processes and practices built on logics of exchange, in ways that might constrain the ability of interlocutors to meaningfully articulate their own positions in fieldwork relations. [ABSTRACT FROM AUTHOR]
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- 2024
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44. Bioethics Without Theory?
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Holm, Søren
- Subjects
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POLICY sciences , *AUTONOMY (Psychology) , *BIOETHICS , *PHILOSOPHY of medicine , *ETHICS , *ETHICS committees , *COMMITMENT (Psychology) , *MEDICAL ethics , *RESEARCH ethics - Abstract
The question that this paper tries to answer is Q: "Can good academic bioethics be done without commitment to moral theory?" It is argued that the answer to Q is an unequivocal "Yes" for most of what we could call "critical bioethics," that is, the kind of bioethics work that primarily criticizes positions or arguments already in the literature or put forward by policymakers. The answer is also "Yes" for much of empirical bioethics. The second part of the paper then provides an analysis of Q in relation to "constructive bioethics," that is, bioethics work aimed at providing an argument for a particular position. In this part, it is argued that a number of the approaches or methods used that initially look like they involve no commitment to moral theory, nevertheless, involve such a commitment. This is shown to be the case for reflective equilibrium, mid-level theory, the use of theory fragments, and argument by analogy. [ABSTRACT FROM AUTHOR]
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- 2024
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45. Pragmatism and Experimental Bioethics.
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Rydenfelt, Henrik
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POLICY sciences , *BIOETHICS , *PHILOSOPHY of medicine , *PHILOSOPHY , *DECISION making , *ETHICS , *MATHEMATICAL models , *HYPOTHESIS , *THEORY , *RESEARCH ethics - Abstract
Pragmatism gained considerable attention in bioethical discussions in the early 21st century. However, some dimensions and contributions of pragmatism to bioethics remain underexplored in both research and practice. It is argued that pragmatism can make a distinctive contribution to bioethics through its concept, developed by Charles S. Peirce and John Dewey, that ethical issues can be resolved through experimental inquiry. Dewey's proposal that policies can be confirmed or disconfirmed through experimentation is developed by comparing it to the confirmation of scientific hypotheses, with a focus on the objection that the consequences of following a moral view or policy do not provide guidance on choosing among competing ethical perspectives. As confirmation of scientific hypotheses typically relies on evidence gathered from observation, the possibility of ethically relevant observation is then explored based on Peirce's views on feelings as emotional interpretants. Finally, the connection between Dewey's experimental ethics and democracy is outlined and compared to unfettered ethical progressivism. [ABSTRACT FROM AUTHOR]
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- 2024
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46. Carácter ético de la investigación científica: la mirada de futuros doctores en educación.
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Carlos González-Acuña, Juan, Valenzuela, Jorge, Muñoz, Carla, and Precht, Andrea
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DOCTORAL students , *EDUCATION research , *DOCTORAL programs , *FOCUS groups , *GROUNDED theory , *RESEARCH ethics - Abstract
This article investigates the representations of doctoral students in education regarding those aspects that configure the ethical aspect of scientific research. In this study, participated 24 doctoral students from different Chilean programs (60% women) between 30 and 52 years of age. The design involved six focus groups, and the interactions were recorded in audio and video. The corpus analysis was carried out under a qualitative approach based on Grounded Theory with a constructivist perspective. The results show the coexistence of two different representations of ethics in educational research. Each of these representations reflects an understanding and a way of conceiving reality regarding the role of ethics in research. The implications of these types of representations for research activities, as well as for the design of doctoral training programs in Chile, are discussed. [ABSTRACT FROM AUTHOR]
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- 2024
47. Network meta‐analysis can inform the ethical evaluation of trials that randomise away from standard of care: The case of symptomatic carotid stenosis.
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Lun, Ronda, Zitikyte, Gabriele, Yogendrakumar, Vignan, Bereznyakova, Olena, Dewar, Brian, Dowlatshahi, Dar, Fahed, Robert, and Shamy, Michel
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STROKE prevention , *DEATH , *MEDICAL care , *STATISTICAL sampling , *PATIENT care , *RANDOMIZED controlled trials , *SURGICAL stents , *META-analysis , *ODDS ratio , *EVIDENCE-based medicine , *CONFIDENCE intervals , *RESEARCH ethics , *CAROTID endarterectomy , *SYMPTOMS ,CAROTID artery stenosis - Abstract
Objective: Little guidance exists on the conduct of randomised clinical trials (RCT) that seek to randomise patients away from standard of care. We sought to test the technique of network meta‐analysis (NMA) to ascertain best available evidence for the purposes of informing the ethical evaluation of RCTs under these circumstances. We used the example of RCTs for patients with symptomatic, moderate to severe carotid stenosis that seek to compare surgical intervention plus medical therapy (standard of care) versus medical therapy (less than standard of care). Study Design and Setting: Network meta‐analysis of RCTs of adults with symptomatic carotid artery stenosis of 50%–99% who were treated with carotid endarterectomy (CEA), carotid artery stenting (CAS), or medical therapy (MT). The primary outcome was any stroke or death until end of follow‐up, and secondary outcome was 30‐day risk of ipsilateral stroke/death. Results: We analysed eight studies, with 7187 subjects with symptomatic moderate/severe stenosis (50%–99%). CEA was more efficacious than MT (HR = 0.82, 95% credible intervals [95% CrI] = 0.73–0.92) and CAS (HR 0.73, 95% CrI = 0.62–0.85) for the prevention of any stroke/death. At 30 days, the odds of experiencing an ipsilateral stroke/death were significantly lower in the CEA group compared to both MT (OR = 0.58, 95% CrI = 0.47–0.72) and CAS (OR = 0.68, 95% CrI = 0.55–0.83). Conclusion: Our results support the feasibility of using NMA to assess best available evidence to inform the ethical evaluation of RCTs seeking to randomise patients away from standard of care. Our results suggest that a strong argument is required to ethically justify the conduct of RCTs that seek to randomise patients away from standard of care in the setting of symptomatic moderate to severe carotid stenosis. [ABSTRACT FROM AUTHOR]
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- 2024
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48. Core Palliative Care Research Competencies Framework for Palliative Care Clinicians.
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Mosoiu, Daniela, Payne, Sheila, Predoiu, Oana, Arantzamendi, Maria, Ling, Julie, Tserkezoglou, Aliki, Mitrea, Nicoleta, Dionisi, Mary, Martínez, Marina, Mason, Stephen, Ancuta, Camelia, and Centeno, Carlos
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PALLIATIVE treatment , *DATABASE management , *RESEARCH funding , *CLINICAL medicine research , *LEADERSHIP , *DESCRIPTIVE statistics , *EXPERIMENTAL design , *CONCEPTUAL structures , *ATTITUDES of medical personnel , *RESEARCH methodology , *COMMUNICATION , *NATIONAL competency-based educational tests , *PROFESSIONAL competence , *HEALTH care teams , *RESEARCH ethics - Abstract
Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice and improves ways to manage pain, other symptoms, and concerns. This work was undertaken in the research for all palliative care clinicians (RESPACC) Erasmus+ project. Aim: To identify and develop a set of core research competencies within a structured framework for all members of the multidisciplinary palliative team. Design: A multi-method approach was used including rapid review of literature, Nominal Group Technique, and expert consultation. A quiz to self-assess research competencies outlined within the Framework was produced. Results: The Framework includes 17 competencies organized in 7 domains: The clinical context, Scientific thinking and research design, Ethics and regulatory framework for research, Study and site management, Data management and informatics, Communication and relationships, and Research leadership. In the consultation process 6 of the 17 competencies were considered as required by each individual team member, and 3 to be present within the palliative care team. Conclusion: Using a multi-method approach, the first Palliative Care Research Framework identifying core research competencies for palliative care clinicians has been developed. The aim of the framework was not to transform palliative care clinicians into researchers, but to ensure that clinicians understand the important role of research and its integration into clinical practice. [ABSTRACT FROM AUTHOR]
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- 2024
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49. e-Tourism Information Literacy and Its Role in Driving Tourist Satisfaction With Online Travel Information: A Qualitative Comparative Analysis.
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Wang, Rui, Wu, Chuanhui, Wang, Xia, Xu, Feifei, and Yuan, Qinjian
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INFORMATION literacy , *SATISFACTION , *COMPARATIVE studies , *HEALTH literacy , *RESEARCH ethics , *INFORMATION ethics , *INFORMATION skills - Abstract
As numerous travel information is provided on digital platforms, information literacy is becoming increasingly important for tourists to address travel-related problems and ensure a smooth tour experience. This study conceptualizes e-tourism information literacy (eTIL) based on previous researches and develops a scale to measure this construct following a systematic approach, from which, 14 items were generated to measure four underlying dimensions of eTIL: information knowledge, information skills, information awareness, and information ethics. Additionally, to examine the interplay between eTIL, information quality, and system quality, fuzzy-set qualitative comparative analysis (fsQCA) is employed on 399 samples to obtain equifinal configurations that lead to tourist satisfaction with online travel information (TSOTI). The results revealed two configurations leading to high TSOTI and three configurations leading to low TSOTI. This study contributes theoretically by constructing the concept of eTIL and explaining its role in driving TSOTI. [ABSTRACT FROM AUTHOR]
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- 2024
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50. Animal Ethics and Tourism: Deepening a Stimulus–Organism–Response (S-O-R) Framework.
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Fakfare, Pipatpong, Lee, Jin-Soo, Kim, Jinkyung Jenny, Ryu, Hyungseo Bobby, and Han, Heesup
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ANIMAL welfare , *RESEARCH ethics , *TOURISM , *ANIMAL behavior , *ETHICS , *ORGANIZATIONAL aims & objectives - Abstract
Animal ethics has been recognized as an emerging issue in tourism, but limited research has concentrated on tourists' behaviors toward animal ethics and its fundamental mechanisms. This study develops a research framework to address this gap, including media coverage and organizational strategies on reducing animal abuse, cognitive and affective states toward animal ethics, norm activation model variables, and behavioral intentions using stimulus–organism–response (S-O-R) theory. Findings indicate that media coverage and organizational strategies can be construed as underlying external stimulus constructs within the S-O-R model in the background of animal-related tourism. This study additionally shows the mediating nature of cognitive and affective states. Findings particularly indicate that personal norm is the focal influencing factor of tourists' behavioral/word-of-mouth intentions toward animal ethics. This research contributes to reducing animal abuse and understanding the underlying theoretical mechanism linked to tourist behaviors and animal ethics. [ABSTRACT FROM AUTHOR]
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- 2024
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