AJOB Empirical Bioethics最新文献

{"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}

{"title":"Diversity, Profit, Control: An Empirical Study of Industry Employees' Views on Ethics in Private Sector Genomics.","authors":"Alexis Walker","doi":"10.1080/23294515.2022.2063993","DOIUrl":"10.1080/23294515.2022.2063993","url":null,"abstract":"<p><strong>Background: </strong>Large amounts of capital are currently being invested in genomics companies across the \"bench to clinic pipeline\" - companies which are now shaping the future of biomedicine globally. Understanding the perspectives of people who work in such companies can contribute to shaping this industry in service of just and equitable futures of medicine.</p><p><strong>Methods: </strong>Using in-depth interviews as the primary method, this paper analyzes perspectives on ethical and social issues in private sector genomics expressed by members of the commercial genomics industry in the US.</p><p><strong>Results: </strong>Interviewees described a wide range of issues as pressing ethical concerns in commercial genomics. Key themes included concerns about diversity in genetic datasets, data governance and control, and pricing and profits in the industry. However, concern about diversity of datasets was not accompanied by expressions of concern about diversity in the industry workforce.</p><p><strong>Conclusions: </strong>Most interviewees described concerns in the industry that are rather removed from their own work. But along with this \"ethical distancing,\" moral concerns appeared to be the basis for competition amongst companies - to attract both employees and customers. Research in business ethics suggests that expanding moral analysis of one's own work helps improve day to day decision-making in the interest of justice. Opening space for people to examine ethics in their own subsector may provide a means for the private sector genomics industry to become a leader in ethics in the biosciences and a model for equity in our current moment of late capitalism.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 3","pages":"166-178"},"PeriodicalIF":0.0,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10194829/pdf/nihms-1899265.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9852391","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":"Managing Pandora’s Box: Familial Expectations around the Return of (Future) Germline Results","authors":"Liza-Marie Johnson, B. Mandrell, Chen Li, Zhaohua Lu, J. Gattuso, Lynn Harrison, Motomi Mori, Annastasia Ouma, M. Pritchard, K. Sharp, K. Nichols","doi":"10.1080/23294515.2022.2063994","DOIUrl":"https://doi.org/10.1080/23294515.2022.2063994","url":null,"abstract":"Abstract Background Pediatric oncology patients are increasingly being offered germline testing to diagnose underlying cancer predispositions. Meanwhile, as understanding of variant pathogenicity evolves, planned reanalysis of genomic results has been suggested. Little is known regarding the types of genomic information that parents and their adolescent children with cancer prefer to receive at the time of testing or their expectations around the future return of genomic results. Methods Parents and adolescent children with cancer eligible for genomic testing for cancer predisposition were surveyed regarding their attitudes and expectations for receiving current and future germline results (ClinicalTrials.gov Identifier: NCT02530658). Results All parents (100%) desired to learn about results for treatable or preventable conditions, with 92.4% wanting results even when there is no treatment or prevention. Parents expressed less interest in receiving uncertain results for themselves (88.3%) than for their children (95.3%). Most parents (95.9%) and adolescents (87.9%) believed that providers have a responsibility to share new or updated germline results indefinitely or at any point during follow-up care. Fewer parents (67.5%) indicated that they would want results if their child was deceased: 10.3% would not want to be contacted, 19.3% were uncertain. Conclusions Expectations for return of new or updated genomic results are high among pediatric oncology families, although up to one third of parents have reservations about receiving such information in the event of their child’s death. These results underscore the importance of high-quality pre-and post-test counseling, conducted by individuals trained in consenting around genomic testing to elicit family preferences and align expectations around the return of germline results.","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 1","pages":"152 - 165"},"PeriodicalIF":0.0,"publicationDate":"2022-04-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49418577","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":"Surrogate Perspectives on Patient Preference Predictors: Good Idea, but I Should Decide How They Are Used.","authors":"Dana Howard,&nbsp;Allan Rivlin,&nbsp;Philip Candilis,&nbsp;Neal W Dickert,&nbsp;Claire Drolen,&nbsp;Benjamin Krohmal,&nbsp;Mark Pavlick,&nbsp;David Wendler","doi":"10.1080/23294515.2022.2040643","DOIUrl":"https://doi.org/10.1080/23294515.2022.2040643","url":null,"abstract":"<p><p>Current practice frequently fails to provide care consistent with the preferences of decisionally-incapacitated patients. It also imposes significant emotional burden on their surrogates. Algorithmic-based patient preference predictors (PPPs) have been proposed as a possible way to address these two concerns. While previous research found that patients strongly support the use of PPPs, the views of surrogates are unknown. The present study thus assessed the views of experienced surrogates regarding the possible use of PPPs as a means to help make treatment decisions for decisionally-incapacitated patients.</p><p><p>This qualitative study used semi-structured interviews to determine the views of experienced surrogates [<i>n</i> = 26] who were identified from two academic medical centers and two community hospitals. The primary outcomes were respondents' overall level of support for the idea of using PPPs and the themes related to their views on how a PPP should be used, if at all, in practice.</p><p><p>Overall, 21 participants supported the idea of using PPPs. The remaining five indicated that they would not use a PPP because they made decisions based on the patient's best interests, not based on substituted judgment. Major themes which emerged were that surrogates, not the patient's preferences, should determine how treatment decisions are made, and concern that PPPs might be used to deny expensive care or be biased against minority groups.</p><p><p>Surrogates, like patients, strongly support the idea of using PPPs to help make treatment decisions for decisionally-incapacitated patients. These findings provide support for developing a PPP and assessing it in practice. At the same time, patients and surrogates disagree over whose preferences should determine how treatment decisions are made, including whether to use a PPP. These findings reveal a fundamental disagreement regarding the guiding principles for surrogate decision-making. Future research is needed to assess this disagreement and consider ways to address it.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 2","pages":"125-135"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9761590/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9226390","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":"Governing Gene Drive Technologies: A Qualitative Interview Study.","authors":"N de Graeff,&nbsp;Karin R Jongsma,&nbsp;Jeantine E Lunshof,&nbsp;Annelien L Bredenoord","doi":"10.1080/23294515.2021.1941417","DOIUrl":"https://doi.org/10.1080/23294515.2021.1941417","url":null,"abstract":"<p><strong>Background: </strong>Gene drive technologies (GDTs) bias the inheritance of a genetic element within a population of non-human organisms, promoting its progressive spread across this population. If successful, GDTs may be used to counter intractable problems such as vector-borne diseases. A key issue in the debate on GDTs relates to what governance is appropriate for these technologies. While governance mechanisms for GDTs are to a significant extent proposed and shaped by professional experts, the perspectives of these experts have not been explored in depth.</p><p><strong>Methods: </strong>A total of 33 GDT experts from different professional disciplines were interviewed to identify, better understand, and juxtapose their perspectives on GDT governance. The pseudonymized transcripts were analyzed thematically.</p><p><strong>Results: </strong>Three main themes were identified: (1) engagement of communities, stakeholders, and publics; (2) power dynamics, and (3) decision-making. There was broad consensus amongst respondents that it is important to engage communities, stakeholders, and publics. Nonetheless, respondents had diverging views on the reasons for doing so and the timing and design of engagement. Respondents also outlined complexities and challenges related to engagement. Moreover, they brought up the power dynamics that are present in GDT research. Respondents stressed the importance of preventing the recurrence of historical injustices and reflected on dilemmas regarding whether and to what extent (foreign) researchers can legitimately make demands regarding local governance. Finally, respondents had diverging views on whether decisions about GDTs should be made in the same way as decisions about other environmental interventions, and on the decision-making model that should be used to decide about GDT deployment.</p><p><strong>Conclusions: </strong>The insights obtained in this interview study give rise to recommendations for the design and evaluation of GDT governance. Moreover, these insights point to unresolved normative questions that need to be addressed to move from general commitments to concrete obligations.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"107-124"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/23294515.2021.1941417","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39148027","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":"Mining the Data: Exploring Rural Patients' Attitudes about the Use of Their Personal Information in Research.","authors":"Jennifer B McCormick,&nbsp;Margaret Hopkins,&nbsp;Erik B Lehman,&nbsp;Michael J Green","doi":"10.1080/23294515.2022.2040644","DOIUrl":"https://doi.org/10.1080/23294515.2022.2040644","url":null,"abstract":"<p><strong>Background: </strong>This study examines rural patients' perceived importance of knowing or being consulted about researchers' access and use of their personal data (identifiable and de-identified health information, and identifiable and de-identified non-health information) across five scenarios. This study also examines their views on stewardship or governance of their personal information by researchers in their healthcare systems.</p><p><strong>Methods: </strong>We conducted a survey by mail. Data were analyzed using descriptive statistics. Multivariable regression analyses were conducted across each scenario and type of personal data with the same variables included in each model.</p><p><strong>Results: </strong>The majority of participants said it was \"very important/absolutely essential\" to know the purpose of the study, to be asked every time, and to know the policies governing researcher access and use of their identifiable health information. Just over two-thirds of respondents thought it \"very important/absolutely essential\" to know who serves on the data governance committee and to have a community member serve. Distrust in healthcare organizations was positively correlated with the scenarios while willingness to give permission to donate leftover biological specimens was negatively correlated.</p><p><strong>Conclusion: </strong>Our study findings indicate that the type of personal information being accessed and used generally matters to 1,407 patients living in rural Pennsylvania. We also demonstrate that knowing their healthcare organizations' governance policies and practices for managing their personal data is important to many rural Pennsylvania patients. Biomedical researchers need to recognize and attend to those differences as much as possible in order to expand opportunities for and participation in research by residents of these rural communities.</p><p><p>Supplemental data for this article is available online at.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":"13 2","pages":"89-106"},"PeriodicalIF":0.0,"publicationDate":"2022-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10038193/pdf/nihms-1883496.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9580345","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}