AJOB Empirical Bioethics

Shim, Janet K.; Foti, Nicole; Vasquez, Emily; Fullerton, Stephanie M.; Bentz, Michael; Jeske, Melanie; Lee, Sandra Soo-Jin

doi: 10.1080/23294515.2023.2201478pmid: 37126431

Abstract Background 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. Methods 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. Results 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. Conclusions 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.

Sleigh, Joanna; Ormond, Kelly; Schneider, Manuel; Stern, Elsbeth; Vayena, Effy

doi: 10.1080/23294515.2023.2201479pmid: 37074681

Abstract Background 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. Methods 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. Results 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. Conclusions 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.

Ackerman, Sara L.; Brown, Julia E.H.; Zamora, Astrid; Outram, Simon

doi: 10.1080/23294515.2023.2209747pmid: 37162201

Abstract Background 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. Methods 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. Results 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. Conclusion 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.

Danis, Marion; Grady, Christine; Noorulhuda, Mariam; Krohmal, Ben; Silverman, Henry; Schwab, Lee; Cho, Hae Lin; Goldstein, Melissa; Wakim, Paul

doi: 10.1080/23294515.2023.2224588pmid: 37417919

Abstract Patients and family members (N = 671) were surveyed in five Mid-Atlantic U.S. hospitals to ascertain the number and kinds of ethical concerns they are presently experiencing or have previously experienced while being sick or receiving medical care. Seventy percent of participants had at least one (range 0–14) type of ethical concern or question. The most commonly experienced concerns pertained to being unsure how to plan ahead or complete an advance directive (29.4%), being unsure whether someone in the family was able to make their own decisions (29.2%), deciding about limiting life-sustaining treatments (28.6%), wondering about disclosing personal medical information to others in the family (26.4%) and not being sure whether to undergo treatment because of cost (26.2%). Most were interested to some degree in getting help from ethics consultants in the future (76.6%). Given this prevalence, common concerns might usefully be addressed systematically, rather than exclusively on a case-by-case basis.

Wesevich, Adam J.; Gulbas, Lauren E.; Ryder, Hilary F.

doi: 10.1080/23294515.2023.2224589pmid: 37343211

Abstract Purpose Medical students receive a varying amount of training in medical ethics and are expected to navigate clinical ethical dilemmas innately. There is little literature on attempts to navigate ethical dilemmas experienced during early clinical experiences and whether current curricula prepare students for these dilemmas. This study explores the different ethical dilemmas experienced by medical students on their third-year clerkships and analyzes the factors, sources, and resolutions proposed by them. Methods From 2016 to 2018, third-year medical students completed a written assignment to describe, analyze, and reflect on a clinical situation in which they experienced an ethical dilemma. They identified specific ethical dilemmas present, potential preventative and aftermath solutions, and reflected on their professional development from their experience. The research team utilized applied thematic analysis to identify themes and patterns in the data. A thematic matrix was utilized to examine similarities and differences across medical students. Results Of the 162 reflections, 144 (88.9%) students indicated an ethical dilemma that included issues related to autonomy and beneficence. Of these, 116 (71.6%) students found the two ethical principles in direct conflict. Students identified three common sources of this conflict: lack of communication; unclear understanding of clinical policies regarding family authority and psychiatric capacity; and medical negligence. Lastly, students suggested different solutions for dealing with and preventing this conflict. Conclusion Our findings suggest that an overwhelming number of students face ethical challenges when confronted with medical situations that raise conflicts between autonomy and beneficence. Their recommended solutions reveal an appeal among students to have tools and strategies in place to ease the need to make difficult decisions. Medical students might be better served by learning about the complexities of ethical decision-making and the likelihood of experiencing moral distress when they feel an inability to implement what they envision as the best solution.

da Graca, Briget; Borries, Trevor; Polk, Heather; Ramakrishnan, Sudha; Testa, Giuliano; Wall, Anji

doi: 10.1080/23294515.2023.2224590pmid: 37343208

Abstract Background: 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. Methods: 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. Results: 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). Conclusions: 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.