AJOB Empirical Bioethics最新文献

{"title":"How Do Accredited Organizations Evaluate the Quality and Effectiveness of Their Human Research Protection Programs?","authors":"Holly Fernandez Lynch,&nbsp;Holly A Taylor","doi":"10.1080/23294515.2022.2090641","DOIUrl":"https://doi.org/10.1080/23294515.2022.2090641","url":null,"abstract":"<p><strong>Background: </strong>Meaningfully evaluating the quality of institutional review boards (IRBs) and human research protection programs (HRPPs) is a long-recognized challenge. To be accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP), organizations must demonstrate that they measure and improve HRPP \"quality, effectiveness, and efficiency\" (QEE). We sought to learn how AAHRPP-accredited organizations interpret and satisfy this standard, in order to assess strengths, weaknesses, and gaps in current approaches and to inform recommendations for improvement.</p><p><strong>Methods: </strong>We conducted 3 small-group interviews with a total of 19 participant representatives of accredited organizations at the 2019 AAHRPP annual meeting. Participants were eligible if they had familiarity with their organization's approach to satisfying the relevant QEE standard.</p><p><strong>Results: </strong>Participants reported lacking clear definitions for HRPP quality or effectiveness but described various approaches to assessing QEE, typically focused on turnaround time, compliance, and researcher satisfaction. Evaluation of IRB members was described as relatively superficial and information regarding research subject experience was not reported as central to QEE assessment, although participants described several efforts to improve consideration of patient, subject, and community perspectives in IRB review. Participants also described efforts to educate and build relationships with key stakeholders as important features of a high-quality HRPP. While generally satisfied with their approaches, participants expressed concern about resource and time constraints that pushed them to be reactive and automatic about QEE, rather than proactive and critical.</p><p><strong>Conclusions: </strong>The relevant AAHRPP accreditation standard may obscure critical gaps in defining and measuring QEE elements. We recommend that AAHRPP: (1) offer a definition of QEE or require accredited organizations to provide their own, to help clarify the rationale and goals behind assessment and improvement efforts, and (2) require accredited organizations to establish QEE objectives and measures focused on participant outcomes and deliberative quality during protocol review.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"23-37"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10108380/pdf/nihms-1885508.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9311185","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Mission Creep or Mission Lapse? Scientific Review in Research Oversight.","authors":"Margaret Waltz, Jill A Fisher, Rebecca L Walker","doi":"10.1080/23294515.2022.2123868","DOIUrl":"10.1080/23294515.2022.2123868","url":null,"abstract":"<p><strong>Background: </strong>The ethical use both of human and non-human animals in research is predicated on the assumption that it is of a high quality and its projected benefits are more significant than the risks and harms imposed on subjects. Yet questions remain about whether and how IRBs and IACUCs should consider the scientific value of proposed research studies.</p><p><strong>Methods: </strong>We draw upon 45 interviews with IRB and IACUC members and researchers with oversight experience about their perceptions of their own roles in reviewing the quality and value of scientific protocols. Interview transcripts were memoed to highlight specific findings, which were then used to identify key themes through an iterative process.</p><p><strong>Results: </strong>IRB and IACUC members expressed broad trust in the need for and value of research, and they often assumed that protocols had social value or that prior review, especially when associated with funding, affirmed both the rigor and merit of those protocols. Some oversight members also took an explicit stance against scientific review by stating that such review is not within the regulatory mandates governing their parts in the oversight system. Yet other interviewees expressed uneasiness about the current paradigm for evaluating the quality and overall value of science, suggesting that IRB and IACUC members perceive gaps in the oversight systems.</p><p><strong>Conclusions: </strong>These findings reveal many similarities in how IRB and IACUC members understand the roles and limitations of their respective oversight committees. We conclude with a discussion of how the lack of a clear mandate regarding scientific review within US federal regulations may undermine ethical engagement of whether human and animal research is scientifically justified, resulting in a \"mission lapse\" wherein no organizational body is clearly responsible for ensuring that the research being conducted has the potential to advance science and benefit society.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"38-49"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9839615/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9258002","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Challenges Experienced by Clinical Ethicists during COVID-19.","authors":"Connie M Ulrich,&nbsp;Janet A Deatrick,&nbsp;Jesse Wool,&nbsp;Liming Huang,&nbsp;Nancy Berlinger,&nbsp;Christine Grady","doi":"10.1080/23294515.2022.2110965","DOIUrl":"https://doi.org/10.1080/23294515.2022.2110965","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers.</p><p><strong>Purpose: </strong>This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States-clinical ethicists-and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others.</p><p><strong>Methods: </strong>This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020-April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes.</p><p><strong>Results: </strong>Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was \"endemic,\" shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists.</p><p><strong>Conclusions: </strong>Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"1-14"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10695377","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"\"I Have Fought for so Many Things\": Disadvantaged families' Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing.","authors":"Sara L Ackerman, Julia E H Brown, Astrid Zamora, Simon Outram","doi":"10.1080/23294515.2023.2209747","DOIUrl":"10.1080/23294515.2023.2209747","url":null,"abstract":"<p><strong>Background: </strong>Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.</p><p><strong>Methods: </strong>We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic development were used to collaboratively interpret fieldnotes and transcripts.</p><p><strong>Results: </strong>Thirty-two families participated. Themes included familial expectations that a genetic diagnosis could be translated into information, understanding, and assistance to improve the quality of a child's day-to-day life. After sequencing, however, genetic information was not readily converted into improved access to services beyond the clinic, with families often struggling to use a genetic diagnosis to advocate for their child.</p><p><strong>Conclusion: </strong>Families' ability to use a genetic diagnosis as an effective advocacy tool beyond the clinic was limited by the knowledge and resources available to them, and by the eligibility criteria used by therapeutic service providers' - which focused on clinical diagnosis and functional criteria more than etiologic information. All families undertaking genomic testing, particularly those who are disadvantaged, need additional support to understand the limits and potential benefits of genetic information beyond the clinic.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"208-217"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10615790/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9555375","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Testing Design Bioethics Methods: Comparing a Digital Game with a Vignette Survey for Neuroethics Research with Young People.","authors":"David M Lyreskog, Gabriela Pavarini, Edward Jacobs, Vanessa Bennett, Geoffrey Mawdsley, Ilina Singh","doi":"10.1080/23294515.2022.2110964","DOIUrl":"10.1080/23294515.2022.2110964","url":null,"abstract":"<p><strong>Background: </strong>Over the last decades, the neurosciences, behavioral sciences, and the social sciences have all seen a rapid development of innovative research methods. The field of bioethics, however, has trailed behind in methodological innovation. Despite the so-called \"empirical turn\" in bioethics, research methodology for project development, data collection and analysis, and dissemination has remained largely restricted to surveys, interviews, and research papers. We have previously argued for a \"Design Bioethics\" approach to empirical bioethics methodology, which develops purpose-built methods for investigation of bioethical concerns. In this paper we compare a research tool created using a design bioethics approach to a \"methods-as-usual\" approach in empirical bioethics.</p><p><strong>Methods: </strong>Our study compared dimensions of engagement with a digital game we created, called \"Tracing Tomorrow,\" to a standard vignette survey. The two tools investigated the same subject matter, digital phenotyping for mental health, in a sample of 301 UK adolescents.</p><p><strong>Results: </strong>Participants who played the game reported a greater sense of presence, emotional engagement, cognitive absorption, and mental health ethics insight, compared to participants who completed the vignette survey. Perceived authenticity and curiosity/motivation to learn more was equivalent for both methods.</p><p><strong>Conclusion: </strong>The results of this study highlights the importance of purpose-built methodology for empirical bioethics research.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"55-64"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9612923/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10695376","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Issues in Donation following Circulatory Death: A Scoping Review Examining Changes over Time from 1993 to 2022.","authors":"Briget da Graca, Trevor Borries, Heather Polk, Sudha Ramakrishnan, Giuliano Testa, Anji Wall","doi":"10.1080/23294515.2023.2224590","DOIUrl":"10.1080/23294515.2023.2224590","url":null,"abstract":"<p><p><b>Background:</b> Ethical frameworks for organ donation following circulatory death (DCD) were established >20 years ago. However, considerable variation exists among these, indicating consensus has not been reached on all issues. Additionally, advances such as cardiac DCD transplants and normothermic regional perfusion (NRP) may have reignited old debates.<b>Methods:</b> We reviewed the English-language literature addressing ethical issues in DCD from 1993 to 2022, examining changes in frequency with which ethical principles and their sub-themes identified within each, were addressed.<b>Results:</b> Non-maleficence was the most frequently addressed principle (192 of 199 articles), as well as the most varied, with 9 subthemes (versus 2-4 within each of the other bioethical principles).<b>Conclusions:</b> There were several changes in the terminology used to refer to DCD over time, and substantial interest in cardiac DCD and NRP in recent publications, arising in 11 and 19 of the 30 publications from 2018 to 2022.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"237-277"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9665124","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical Healthcare Attitudes of Japanese Citizens and Physicians: Patient-Centered or Family-Centered?","authors":"Yoshiyuki Takimoto,&nbsp;Tadanori Nabeshima","doi":"10.1080/23294515.2022.2160511","DOIUrl":"10.1080/23294515.2022.2160511","url":null,"abstract":"<p><strong>Background: </strong>In current Western medical ethics, patient-centered medicine is considered the norm. However, the cultural background of collectivism in East Asia often leads to family-centered decision-making. In Japan, prior studies have reported that family-centered decision-making is more likely to be preferred in situations of disease notification and end-of-life decision-making. Nonetheless, there has been a recent shift from collectivism to individualism due to changes in the social structure. Various personal factors have also been reported to influence moral decision-making. Therefore, this study examined whether the current trend in attitudes of healthcare decision-making in Japan is family-centered or patient-centered among the general public and physicians. In addition, the personal factors that influence this tendency were examined.</p><p><strong>Methods: </strong>Three vignettes on disease notification and two vignettes on decision-making during end-of-life care were created, and 457 members of the public and 284 physicians were asked about their attitudes (behavioral intentions) regarding these vignettes.</p><p><strong>Results: </strong>Approximately, 95% of physicians were patient-centered in explaining the patient's severe medical condition. However, approximately 80% of physicians emphasized the wishes of the family over patient wishes when making life-sustaining decisions. Nearly half the general public emphasized the patient's wishes in the explanation of a severe medical condition and in life-sustaining decisions. In both the public and physician groups, personal factors, particularly the presence or absence of a disease under treatment and prior caregiving experience, influenced ethical attitudes toward medical treatment decisions.</p><p><strong>Conclusions: </strong>In relatively low-conflict situations, such as the announcement of a patient's medical condition, physicians tended to be patient-centered, while they tended to be family-centered in situations of strong conflict in withholding life-sustaining treatment. The fact that personal factors influenced the family-centered response in situations of strong conflict highlights the importance of not only acquiring knowledge of medical ethics but also learning to fairly apply this knowledge in practice.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 3","pages":"125-134"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9922494","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"A Mixed Methods Analysis of Requests for Religious Exemptions to a COVID-19 Vaccine Requirement.","authors":"Armand H Matheny Antommaria,&nbsp;Elizabeth Lanphier,&nbsp;Anne Housholder,&nbsp;Michelle McGowan","doi":"10.1080/23294515.2022.2123867","DOIUrl":"https://doi.org/10.1080/23294515.2022.2123867","url":null,"abstract":"<p><p><b>Background:</b> While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions.<b>Methods:</b> We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States.<b>Results:</b> Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet.<b>Conclusions:</b> Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"15-22"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9242513","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Community Engagement in Precision Medicine Research: Organizational Practices and Their Impacts for Equity.","authors":"Janet K Shim, Nicole Foti, Emily Vasquez, Stephanie M Fullerton, Michael Bentz, Melanie Jeske, Sandra Soo-Jin Lee","doi":"10.1080/23294515.2023.2201478","DOIUrl":"10.1080/23294515.2023.2201478","url":null,"abstract":"<p><strong>Background: </strong>In the wake of mandates for biomedical research to increase participation by members of historically underrepresented populations, community engagement (CE) has emerged as a key intervention to help achieve this goal.</p><p><strong>Methods: </strong>Using interviews, observations, and document analysis, we examine how stakeholders in precision medicine research understand and seek to put into practice ideas about who to engage, how engagement should be conducted, and what engagement is for.</p><p><strong>Results: </strong>We find that ad hoc, opportunistic, and instrumental approaches to CE exacted significant consequences for the time and resources devoted to engagement and the ultimate impacts it has on research. Critical differences emerged when engagement and research decisionmaking were integrated with each other versus occurring in parallel, separate parts of the study organization, and whether community members had the ability to determine which issues would be brought to them for consideration or to revise or even veto proposals made upstream based on criteria that mattered to them. CE was understood to have a range of purposes, from instrumentally facilitating recruitment and data collection, to advancing community priorities and concerns, to furthering long-term investments in relationships with and changes in communities. These choices about who to engage, what engagement activities to support, how to solicit and integrate community input into the workflow of the study, and what CE was for were often conditioned upon preexisting perceptions and upstream decisions about study goals, competing priorities, and resource availability.</p><p><strong>Conclusions: </strong>Upstream choices about CE and constraints of time and resources cascade into tradeoffs that often culminated in \"pantomime community engagement.\" This approach can create downstream costs when engagement is experienced as improvised and sporadic. Transformations are needed for CE to be seen as a necessary scientific investment and part of the scientific process.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"185-196"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10615663/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9523489","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"How Interactive Visualizations Compare to Ethical Frameworks as Stand-Alone Ethics Learning Tools for Health Researchers and Professionals.","authors":"Joanna Sleigh, Kelly Ormond, Manuel Schneider, Elsbeth Stern, Effy Vayena","doi":"10.1080/23294515.2023.2201479","DOIUrl":"10.1080/23294515.2023.2201479","url":null,"abstract":"<p><strong>Background: </strong>Despite the bourgeoning of digital tools for bioethics research, education, and engagement, little research has empirically investigated the impact of interactive visualizations as a way to translate ethical frameworks and guidelines. To date, most frameworks take the format of text-only documents that outline and offer ethical guidance on specific contexts. This study's goal was to determine whether an interactive-visual format supports frameworks in transferring ethical knowledge by improving learning, deliberation, and user experience.</p><p><strong>Methods: </strong>An experimental comparative study was conducted with a pre-, mid-, and post-test design using the online survey platform Qualtrics. Participants were university based early-stage health researchers who were randomly assigned to either the control condition (text-only document) or the experimental condition (interactive-visual). The primary outcome variables were learning, (measured using a questionnaire), deliberation (using cases studies) and user experience (measured using the SED/UD Scale). Analysis was conducted using descriptive statistics and mixed-effects linear regression.</p><p><strong>Results: </strong>Of the 80 participants, 44 (55%) used the text-only document and 36 (45%) used the interactive-visual. Results of the knowledge-test scores showed a statistically significant difference between participants' post-test scores, indicating that the interactive-visual format better supported understanding, acquisition, and application of the framework's knowledge. Findings from the case studies showed both formats supported ethical deliberation. Results further indicated the interactive-visual provided an overall better episodic and remembered user experience compared with the text-only document.</p><p><strong>Conclusions: </strong>Our findings show that ethical frameworks formatted with interactive and visual qualities provide a more pleasing user experience and are effective formats for ethics learning and deliberation. These findings have implications for practitioners developing and deploying ethical frameworks and guidelines (e.g., in educational or employee-onboarding settings), in that the knowledge generated can lead to more effective dissemination practices of normative guidelines and health data ethics concepts.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"197-207"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9752370","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}