AJOB Empirical Bioethics最新文献

{"title":"Perceived Benefits of Ethics Consultation Differ by Profession: A Qualitative Survey Study.","authors":"Annie B Friedrich,&nbsp;Elizabeth M Kohlberg,&nbsp;Jay R Malone","doi":"10.1080/23294515.2022.2093423","DOIUrl":"https://doi.org/10.1080/23294515.2022.2093423","url":null,"abstract":"<p><strong>Background: </strong>There are numerous benefits to ethics consultation services, but little is known about the reasons different professionals may or may not request an ethics consultation. Inter-professional differences in the perceived utility of ethics consultation have not previously been studied.<b>Methods:</b> To understand profession-specific perceived benefits of ethics consultation, we surveyed all employees at an urban tertiary children's hospital about their use of ethics committee services (n = 842).<b>Results:</b> Our findings suggest that nurses and physicians find ethics consultations useful for different reasons; physicians were more likely to report normative benefits, while nurses were more likely to report communicative and relational benefits.<b>Conclusions:</b> These findings support an open model of ethics consultation and may also help ethics committees to better understand consultation requests and remain attuned to the needs of various professional groups.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"14 1","pages":"50-54"},"PeriodicalIF":0.0,"publicationDate":"2023-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10748061","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":"Navigating Pandemic Moral Distress at Home and at Work: Frontline Workers' Experiences.","authors":"S A Miner,&nbsp;B E Berkman,&nbsp;V Altiery de Jesus,&nbsp;L Jamal,&nbsp;C Grady","doi":"10.1080/23294515.2022.2064000","DOIUrl":"https://doi.org/10.1080/23294515.2022.2064000","url":null,"abstract":"<p><p><b>Background:</b> During the COVID-19 pandemic, frontline workers faced a series of challenges balancing family and work responsibilities. These challenges included making decisions about how to reduce COVID-19 exposure to their families while still carrying out their employment duties and caring for their children. We sought to understand how frontline workers made these decisions and how these decisions impacted their experiences.<b>Methods:</b> Between October 2020 and May 2021, we conducted 61 semi-structured interviews in English or Spanish, with individuals who continued to work outside of the home during the pandemic and had children living at home. Interviews were recorded, transcribed verbatim, and analyzed using abductive methods.<b>Results:</b> Frontline workers experienced moral distress, the inability to act in accordance with their values and obligations because of internal or external constraints. Their moral distress was a result of the tensions they felt as workers and parents, which sometimes led them to feel like they had to compromise on either or both responsibilities. Individuals felt morally conflicted because 1) their COVID-19 work exposures presented risk that often jeopardized their family's health; 2) their work hours often conflicted with their increased childcare responsibilities; and 3) they felt a duty to their colleagues, patients/customers, and communities to continue to show-up to work.<b>Conclusions:</b> Our findings point to a need to expand the concept of moral distress to include the perspectives of frontline workers outside of the healthcare professions and the fraught decisions that workers make outside of work that may impact their moral distress. Expanding the concept of moral distress also allows for a justice-based framing that can focus attention on the disparities inherent in much frontline work and can justify programmatic recommendations, like increasing paid childcare opportunities, to alleviate moral distress.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"215-225"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10679540","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":"Institutional Review Board Use of Outside Experts: A National Survey.","authors":"Kimberley Serpico,&nbsp;Vasiliki Rahimzadeh,&nbsp;Luke Gelinas,&nbsp;Lauren Hartsmith,&nbsp;Holly Fernandez Lynch,&nbsp;Emily E Anderson","doi":"10.1080/23294515.2022.2090459","DOIUrl":"https://doi.org/10.1080/23294515.2022.2090459","url":null,"abstract":"<p><strong>Background: </strong>Institutional review board (IRB) expertise is necessarily limited by maintaining a manageable board size. IRBs are therefore permitted by regulation to rely on outside experts for review. However, little is known about whether, when, why, and how IRBs use outside experts.</p><p><strong>Methods: </strong>We conducted a national survey of U.S. IRBs to characterize utilization of outside experts. Our study uses a descriptive, cross-sectional design to understand how IRBs engage with such experts and to identify areas where outside expertise is most frequently requested.</p><p><strong>Results: </strong>The survey response rate was 18.4%, with 55.4% of respondents reporting their institution's IRB uses outside experts. Nearly all respondents who reported using outside experts indicated they do so less than once a month, but occasionally each year (95%). The most common method of identifying an outside expert was securing a previously known subject matter expert (83.3%). Most frequently, respondents sought consultation for scientific expertise not held by current members (69.6%). Almost all respondents whose IRBs had used outside experts reported an overall positive impact on the IRB review process (91.5%).</p><p><strong>Conclusions: </strong>Just over half of the IRBs in our sample report use of outside experts; among them, outside experts were described as helpful, but their use was infrequent overall. Many IRBs report not relying on outside experts at all. This raises important questions about what type of engagement with outside experts should be viewed as optimal to promote the highest quality review. For example, few respondents sought assistance from a Community Advisory Board, which could address expertise gaps in community perspectives. Further exploration is needed to understand how to optimize IRB use of outside experts, including how to recognize when expertise is lacking, what barriers IRBs face in using outside experts, and perspectives on how outside expert review impacts IRB decision-making and review quality.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"251-262"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10360021/pdf/nihms-1906786.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10211449","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":"Diversity in IRB Membership: Views of IRB Chairpersons at U.S. Universities and Academic Medical Centers.","authors":"Sydney Churchill,&nbsp;Emily A Largent,&nbsp;Elizabeth Taggert,&nbsp;Holly Fernandez Lynch","doi":"10.1080/23294515.2022.2110962","DOIUrl":"https://doi.org/10.1080/23294515.2022.2110962","url":null,"abstract":"<p><strong>Background: </strong>Diversity in Institutional Review Board (IRB) membership is important for both intrinsic and instrumental reasons, including fairness, promoting trust, improving decision quality, and responding to systemic racism. Yet U.S. IRBs remain racially and ethnically homogeneous, even as gender diversity has improved. Little is known about IRB chairpersons' perspectives on membership diversity and barriers to increasing it, as well as current institutional efforts to promote diversity, equity, and inclusion (DEI) within IRB membership.</p><p><strong>Methods: </strong>We surveyed IRB chairpersons leading U.S. boards registered with the Office for Human Research Protections. Here, we focus exclusively on responses from a subset of 388 chairpersons of IRBs at universities and academic medical centers (AMCs).</p><p><strong>Results: </strong>Board chairs were predominantly white and evenly split between men and women. Only about half reported that their boards had at least one member who is Black or African American (51%), Asian (56%), or Hispanic (48%), with 85% of university/AMC boards comprised entirely (15%) or mostly (70%) of white members. Most IRB chairpersons (64%) reported satisfaction with the current diversity of their membership. Participants largely agreed that considering diversity in the selection of IRB members is important (91%), including to improve the quality of IRB deliberation (80%), with an emphasis on racial/ethnic (85%) and gender diversity (74%). Most participants (80%) reported some type of active DEI effort regarding board membership at their university/AMC and just over half (57%) expressed satisfaction with these efforts.</p><p><strong>Conclusions: </strong>Our national survey found that although university/AMC IRB chairpersons report valuing diversity in board membership, it may be lacking in key areas. Going forward, it will be important to specify clear reasons for diversity in the IRB context, as well to establish targets for acceptable levels of board diversity and to match DEI efforts to those targets.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"237-250"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10679561","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":"Physicians' Perspectives on Ethical Issues Regarding Expensive Anti-Cancer Treatments: A Qualitative Study.","authors":"Charlotte H C Bomhof,&nbsp;Maartje Schermer,&nbsp;Stefan Sleijfer,&nbsp;Eline M Bunnik","doi":"10.1080/23294515.2022.2110963","DOIUrl":"https://doi.org/10.1080/23294515.2022.2110963","url":null,"abstract":"<p><strong>Background: </strong>When anti-cancer treatments have been given market authorization, but are not (yet) reimbursed within a healthcare system, physicians are confronted with ethical dilemmas. Arranging access through other channels, e.g., hospital budgets or out-of-pocket payments by patients, may benefit patients, but leads to unequal access. Until now, little is known about the perspectives of physicians on access to non-reimbursed treatments. This interview study maps the experiences and moral views of Dutch oncologists and hematologists.</p><p><strong>Methods: </strong>A diverse sample of oncologists and hematologists (n = 22) were interviewed. Interviews were analyzed thematically using Nvivo 12 qualitative data software.</p><p><strong>Results: </strong>This study reveals stark differences between physicians' experiences and moral views on access to anti-cancer treatments that are not (yet) reimbursed: some physicians try to arrange other ways of access and some physicians do not. Some physicians inform patients about anti-cancer treatments that are not yet reimbursed, while others wait for reimbursement. Some physicians have principled moral objections to out-of-pocket payment, while others do not.</p><p><strong>Conclusion: </strong>Oncologists and hematologists in the Netherlands differ greatly in their perspectives on access to expensive anti-cancer treatments that are not (yet) reimbursed. As a result, they may act differently when confronted with dilemmas in the consultation room. Physicians working in different healthcare systems may face similar dilemmas.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"275-286"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10630771","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":"Addressing Moral Distress: lessons Learnt from a Non-Interventional Longitudinal Study on Moral Distress.","authors":"Trisha M Prentice,&nbsp;Dilini I Imbulana,&nbsp;Lynn Gillam,&nbsp;Peter G Davis,&nbsp;Annie Janvier","doi":"10.1080/23294515.2022.2093422","DOIUrl":"https://doi.org/10.1080/23294515.2022.2093422","url":null,"abstract":"<p><strong>Background: </strong>Moral distress is prevalent within the neonatal intensive care unit (NICU) and can negatively affect clinicians. Studies have evaluated the causes of moral distress and interventions to mitigate its harmful effects. However, the effects of participating in moral distress studies have not been evaluated.</p><p><strong>Objective: </strong>To evaluate the impact of participation in a longitudinal, non-intervention research project on moral distress in the NICU.</p><p><strong>Design: </strong>Clinicians who previously participated in an 18-month longitudinal research study on moral distress at two NICUs were invited to complete a questionnaire on the impact of participation. The original study required regular completion of surveys that sought predictions of death, disability and the intensity/nature of moral distress experienced by clinicians caring for extremely preterm babies. Individual and unit-wide effects were explored. Free-text responses to open-ended questions were analyzed using inductive content analysis.</p><p><strong>Results: </strong>A total of 249/463 (53%) eligible clinicians participated. Participation in the original 18-month study was perceived as having a positive impact by 58% of respondents. Clinicians found articulating their views therapeutic (76%) and useful in clarifying personal opinions about the babies (85%). Free-text responses revealed the research stimulated increased reflection, validated feelings and increased dialogue amongst clinicians. Respondents generally did not find participation distressing (70%). However, a small number of physicians felt the focus of discussion shifted from the baby to the clinicians. Intensity and prevalence of moral distress did not significantly change over the 18-month period.</p><p><strong>Conclusions: </strong>Participating in moral distress research prompted regular reflection regarding attitudes toward fragile patients, improving ethical awareness. This is useful in clarifying personal views that may influence patient care. Participation also enhanced communication around difficult clinical scenarios and improved provider satisfaction. These factors are insufficient to significantly reduce moral distress in isolation.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"226-236"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9192444","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":"Patient Perspectives on the Use of Frailty, Cognitive Function, and Age in Kidney Transplant Evaluation.","authors":"Prakriti Shrestha, Sarah E Van Pilsum Rasmussen, Maria Fazal, Nadia M Chu, Jacqueline M Garonzik-Wang, Elisa J Gordon, Mara McAdams-DeMarco, Casey Jo Humbyrd","doi":"10.1080/23294515.2022.2090460","DOIUrl":"10.1080/23294515.2022.2090460","url":null,"abstract":"<p><strong>Background: </strong>The allocation of scarce deceased donor kidneys is a complex process. Transplant providers are increasingly relying on constructs such as frailty and cognitive function to guide kidney transplant (KT) candidate selection. Patient views of the ethical issues surrounding the use of such constructs are unclear. We sought to assess KT candidates' attitudes and beliefs about the use of frailty and cognitive function to guide waitlist selection.</p><p><strong>Methods: </strong>KT candidates were randomly recruited from an ongoing single-center cohort study of frailty and cognitive function. Semi-structured interviews were conducted, and thematic analysis was performed. Inductively derived themes were mapped onto bioethics principles.</p><p><strong>Results: </strong>Twenty interviews were conducted (65% contact rate, 100% participation rate) (60% male; 70% White). With respect to the use of frailty and cognitive function in waitlisting decisions, four themes emerged in which participants: (1) valued maximizing a scarce resource (utility); (2) prioritized equal access to all patients (equity); (3) appreciated a proportional approach to the use of equity and utility (precautionary utility); and (4) sought to weigh utility- and equity-based concerns regarding social support. While some participants believed frailty and cognitive function were useful constructs to maximize utility, others believed their use would jeopardize equity. Patients were uncomfortable with using single factors such as frailty or cognitive impairment to deny someone access to transplantation; participants instead encouraged using the constructs to identify opportunities for intervention to improve frailty and cognitive function prior to KT.</p><p><strong>Conclusions: </strong>KT candidates' values mirrored the current allocation strategy, seeking to balance equity and utility in a just manner, albeit with conflicting viewpoints on the appropriate use of frailty and cognitive impairment in waitlisting decisions.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 4","pages":"263-274"},"PeriodicalIF":0.0,"publicationDate":"2022-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11288332/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10617225","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 Healthcare Workers Delivering Clinical Care during Health Emergencies and Disasters: A Rapid Review of Qualitative Studies and Thematic Synthesis.","authors":"Mariana Dittborn, Constanza Micolich, Daniela Rojas, Sofía P Salas","doi":"10.1080/23294515.2022.2063996","DOIUrl":"10.1080/23294515.2022.2063996","url":null,"abstract":"<p><p><b>Background:</b> The COVID-19 pandemic has posed several ethical challenges worldwide. Understanding care providers' experiences during health emergencies is key to develop comprehensive ethical guidelines for emergency and disaster circumstances.<b>Objectives:</b> To identify and synthetize available empirical data on ethical challenges experienced by health care workers (HCWs) providing direct patient care in health emergencies and disaster scenarios that occurred prior to COVID-19, considering there might be a significant body of evidence yet to be reported on the current pandemic.<b>Methods:</b> A rapid review of qualitative studies and thematic synthesis was conducted. Medline and Embase were searched from inception to December 2020 using \"public health emergency\" and \"ethical challenges\" related keywords. Empirical studies examining ethical challenges experienced by frontline HCWs during health emergencies or disasters were included. We considered that ethical challenges were present when participants and/or authors were uncertain regarding how one should behave, or when different values or ethical principles are compromised when making decisions.<b>Outcome:</b> After deduplication 10,160 titles/abstracts and 224 full texts were screened. Twenty-two articles were included, which were conducted in 15 countries and explored eight health emergency or disaster events. Overall, a total of 452 HCWs participants were included. Data were organized into five major themes with subthemes: HCWs' vulnerability, Duty to care, Quality of care, Management of healthcare system, and Sociocultural factors.<b>Conclusion:</b> HCWs experienced a great variety of clinical ethical challenges in health emergencies and disaster scenarios. Core themes identified provide evidence-base to inform the development of more comprehensive and supportive ethical guidelines and training programmes for future events, that are grounded on actual experiences of those providing care during emergency and disasters.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 3","pages":"179-195"},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9881594/pdf/nihms-1867243.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10637053","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":"Patients' Priorities for Surrogate Decision-Making: Possible Influence of Misinformed Beliefs.","authors":"E J Jardas,&nbsp;Robert Wesley,&nbsp;Mark Pavlick,&nbsp;David Wendler,&nbsp;Annette Rid","doi":"10.1080/23294515.2021.1983665","DOIUrl":"https://doi.org/10.1080/23294515.2021.1983665","url":null,"abstract":"<p><strong>Background: </strong>Many patients have three primary goals for how treatment decisions are made for them in the event of decisional incapacity. They want to be treated consistent with their preferences and values, they want their family to be involved in making decisions, and they want to minimize the stress on their family. The present paper investigates how patients' beliefs about surrogate decision-making influence which of these three goals they prioritize. <b>Methods:</b> Quantitative survey of 1,169 U.S. patients to assess their beliefs about surrogate decision-making, and how these beliefs influence patients' priorities for surrogate decision-making. <b>Results:</b> Most patients believed that families in general (68.8%) and their own family in particular (83.4%) frequently, almost always, or always know which treatments the patient would want in the event of incapacity. Patients with these beliefs were more likely to prioritize the goal of involving their family in treatment decision-making over the goal of minimizing family stress. Most patients (77.4%) also believed their family would experience significant stress from helping to make treatment decisions. However, patients' priorities were largely unchanged by this belief. <b>Conclusions:</b> Prior reports suggest that patients overestimate the extent to which their family knows which treatments they want in the event of decisional incapacity. The present analysis adds that these patients might be more likely to prioritize the goal of involving their family in treatment decision-making, even when this results in the family experiencing significant distress. This finding highlights that patients' misinformed beliefs about their family's knowledge might influence patients' priorities for surrogate decision-making, raising important questions for clinical practice, policy, and future research.</p><p><p>Supplemental data for this article is available online at https://doi.org/10.1080/23294515.2021.1983665.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"137-151"},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39476547","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":"Advancing a Data Justice Framework for Public Health Surveillance.","authors":"Mara Buchbinder, Eric Juengst, Stuart Rennie, Colleen Blue, David L Rosen","doi":"10.1080/23294515.2022.2063997","DOIUrl":"10.1080/23294515.2022.2063997","url":null,"abstract":"<p><strong>Background: </strong>Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance.</p><p><strong>Methods: </strong>We conducted qualitative, semi-structured interviews with 24 people living with HIV who had been previously incarcerated in county jails about their perspectives on and experiences with HIV surveillance, as part of a larger study to characterize ethical considerations in leveraging big data techniques to enhance continuity of care for incarcerated people living with HIV.</p><p><strong>Results: </strong>Most participants expressed support for the state health department tracking HIV testing results and viral load data. Several viewed HIV surveillance as a violation of privacy, and several had actively avoided contact from state public health outreach workers. Participants were most likely to express reservations about surveillance when they viewed the state's motives as self-interested. Perspectives highlight the mistrust that structurally vulnerable people may have in the state's capacity to act as an agent of welfare. Findings suggest that adopting a nuanced, context-sensitive view on surveillance is essential.</p><p><strong>Conclusions: </strong>Establishing trustworthiness through interpersonal interactions with public health personnel is important to reversing historical legacies of harm to racial minorities and structurally vulnerable groups. Empowering stakeholders to participate in the design and implementation of data infrastructure and governance is critical for advancing a data justice agenda, and can offset privacy concerns. The next steps in advancing the data justice framework in public health surveillance will be to innovate ways to represent the voices of structurally vulnerable groups in the design and governance of big data initiatives.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 3","pages":"205-213"},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10777676/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41152820","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}