AJOB Empirical Bioethics最新文献

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Primary Care Physician Perspectives on Artificial Intelligence for Dementia Screening: A Qualitative Study. 初级保健医生对痴呆筛查人工智能的看法:一项定性研究。
AJOB Empirical Bioethics Pub Date : 2026-01-01 Epub Date: 2026-02-17 DOI: 10.1080/23294515.2026.2632089
Hannah G Hanson, Jalayne J Arias, Heather M Wurtz, Margaret Manchester, Catherine Scipion, Alex D Federman
{"title":"Primary Care Physician Perspectives on Artificial Intelligence for Dementia Screening: A Qualitative Study.","authors":"Hannah G Hanson, Jalayne J Arias, Heather M Wurtz, Margaret Manchester, Catherine Scipion, Alex D Federman","doi":"10.1080/23294515.2026.2632089","DOIUrl":"10.1080/23294515.2026.2632089","url":null,"abstract":"<p><strong>Background: </strong>Automated approaches to cognitive impairment screening may soon achieve sufficient levels of accuracy for clinical implementation but they present potentially serious ethical challenges. Overcoming such challenges for successful implementation of automated screening may depend on the perspective of the clinicians who are its intended users.</p><p><strong>Methods: </strong>We conducted a qualitative study of internal medicine, geriatrics and family medicine physicians recruited from ambulatory practices in New York City, NY to identify ethical challenges of implementing automated CI screening (<i>n</i> = 22). In four focus groups, we explored attitudes and beliefs about routine manual screening for cognitive impairment and automated screening based in machine learning models of data from electronic medical records (EMR) or patient audio recordings, using hypothetical scenarios. Focus group recordings were transcribed and analyzed using grounded theory.</p><p><strong>Results: </strong>Participants reported routine screening for cognitive impairment only in the context of the Medicare annual wellness visit and generally avoided routine screening because of limited treatment options to support patients, such as poor access to geriatrics/neuropsychiatric services. Thematic analysis revealed several perceived benefits: enhanced clinical efficiency, engagement in cognitive healthcare of their patients, and expanded access to cognitive care. They identified several potential challenges with ethics implications: concerns about accuracy of the technology, bias, difficulty communicating the technology and results to patients and caregivers that could impact their ability to provide informed consent, and risks to patients (privacy, stigmatization and insurability). They noted that without more health system infrastructure to support patients with dementia, the benefits of automated screening would be limited.</p><p><strong>Conclusions: </strong>Physicians identified several critical ethical challenges to automated CI screening. Health systems will need to address these challenges to ensure benefit for and the safety, autonomy and privacy of patients and ultimately, the successful implementation of such technology.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"42-49"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13678654/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146214414","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}
引用次数: 0
The Impact of Family Social Identity on Ethical Decision-Making in the NICU. 家庭社会认同对新生儿重症监护病房伦理决策的影响
AJOB Empirical Bioethics Pub Date : 2026-01-01 Epub Date: 2026-02-23 DOI: 10.1080/23294515.2026.2632090
Carey DeMichelis, Elizabeth Lanphier, Uchenna Anani
{"title":"The Impact of Family Social Identity on Ethical Decision-Making in the NICU.","authors":"Carey DeMichelis, Elizabeth Lanphier, Uchenna Anani","doi":"10.1080/23294515.2026.2632090","DOIUrl":"10.1080/23294515.2026.2632090","url":null,"abstract":"<p><strong>Background: </strong>Little is understood on how intersectionality and social background of patients and families influence ethical and clinical decision-making, particularly in the critical care setting. This study aims to explore how family identity and socioeconomic features influence the perceived medical appropriateness and ethical permissibility of treatment options for NICU patients when controlling for patient diagnosis and prognosis.</p><p><strong>Methods: </strong>We conducted focus groups (n = 7) with interdisciplinary Neonatal Intensive Care Unit (NICU) health care professionals (N = 33) at a single Level IV NICU over an 8-month period. Participants reviewed and discussed a hypothetical case of a neonate with severe neurological impairment. Focus groups received the same medical information regarding the patient and prognosis but were provided 1 of 2 social scenarios where the family's contextual information (parental education, first language, religion, medical literacy, access to care, family structure, and parental presence at the bedside) were intentionally varied. Comparative thematic analysis was performed.</p><p><strong>Results: </strong>Critical differences were identified in the way participants: (1) responded to parental requests for continued intervention and (2) incorporated the family's education, income, geography, medical literacy, and active presence on the unit in their medical recommendations. Specifically, we found that teams were more open to the idea of accommodating parental requests in the context of increased family resources, than they were in the context of lower family resources.</p><p><strong>Conclusion: </strong>Interpretation of family social context by NICU care teams can produce disparities in which interventions are offered, and which parental preferences are accommodated, underscoring the impact of family and social characteristics on clinical care.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"50-59"},"PeriodicalIF":0.0,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147272318","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}
引用次数: 0
Alzheimer's Disease Clinical Trial Decision-Making Among Patients with Mild Cognitive Impairment and Their Study Partners. 轻度认知障碍患者及其研究伙伴的阿尔茨海默病临床试验决策
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-10-28 DOI: 10.1080/23294515.2025.2576830
Chelsea G Cox, Adam I Birnbaum, Christian R Salazar, Megan Witbracht, Steven P Tam, Gaby T Thai, S Ahmad Sajjadi, Daniel L Gillen, Joshua D Grill
{"title":"Alzheimer's Disease Clinical Trial Decision-Making Among Patients with Mild Cognitive Impairment and Their Study Partners.","authors":"Chelsea G Cox, Adam I Birnbaum, Christian R Salazar, Megan Witbracht, Steven P Tam, Gaby T Thai, S Ahmad Sajjadi, Daniel L Gillen, Joshua D Grill","doi":"10.1080/23294515.2025.2576830","DOIUrl":"10.1080/23294515.2025.2576830","url":null,"abstract":"<p><p><b>Background</b>. Prodromal Alzheimer's disease (AD) clinical trials enroll patients with mild cognitive impairment (MCI) and their study partners. This study examined trial enrollment decision-making and risk for misunderstanding trial information presented in an informed consent process for prodromal AD trials.</p><p><p><b>Methods</b>. We performed structured interviews with patients with MCI and individuals who could serve as their study partners. We presented details of a hypothetical prodromal AD trial, followed by questionnaires to assess involvement of the study partner in trial decisions, patient capacity to consent, and patient health numeracy skills.</p><p><p><b>Results</b>. Among 65 patient participants, most were male (66%) and non-Hispanic White (88%) with a mean (standard deviation) age of 74.9 (8.4) years. Among 57 study partners, most were spouses (83%), female (74%), and non-Hispanic White (91%) with a mean (standard deviation) age of 70.3 (13.6). Most patient participants (66%) and study partners (72%) reported they would make enrollment decisions in partnership; 28% of patient participants said they would make the decision themselves, with input from a study partner. Twenty-five patient participants (38%) lacked capacity to consent to the trial; 38% demonstrated impaired health numeracy. Seventeen patient participants (26%) demonstrated both a lack of capacity and impaired health numeracy, among whom seven reported they would make enrollment decisions on their own, with input from a study partner.</p><p><p><b>Conclusions</b>. Some patients with MCI demonstrated a lack of capacity to consent, impaired health numeracy, or both, putting them at risk for misunderstanding trial information in the consent process for a prodromal AD clinical trial.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"277-285"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12593232/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145379188","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}
引用次数: 0
Informed Consent Documents from Psychedelic Clinical Trials: A Descriptive Ethical Analysis. 致幻剂临床试验的知情同意文件:描述性伦理分析。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-07-16 DOI: 10.1080/23294515.2025.2526339
Katherine Cheung, Caleigh Propes, Marianna Graziosi, Kyle Patch, David B Yaden
{"title":"Informed Consent Documents from Psychedelic Clinical Trials: A Descriptive Ethical Analysis.","authors":"Katherine Cheung, Caleigh Propes, Marianna Graziosi, Kyle Patch, David B Yaden","doi":"10.1080/23294515.2025.2526339","DOIUrl":"10.1080/23294515.2025.2526339","url":null,"abstract":"<p><strong>Background: </strong>Classic psychedelics, such as psilocybin and LSD, evoke certain kinds of altered states of consciousness. Specific features of the experience, such as its allegedly ineffable nature, have been discussed as posing challenges to the informed consent process. A growing call for tailored informed consent documents (ICDs) in the psychedelic bioethics literature raises the question of how closely ICDs used in contemporary psychedelic trials reflect the concrete suggestions and proposals offered by psychedelic bioethicists.</p><p><strong>Methods: </strong>In this article, we review ICDs from psilocybin clinical trials in the United States. Using a content analysis approach, we provide a systematic qualitative description of the ICDs which comprise our final sample (<i>N</i> = 28; 28 clinical trials across 13 unique sites). Coders demonstrated good reliability (κ = .683).</p><p><strong>Results: </strong>Qualitative analyses revealed that most of the coding aligned with expectations based upon the psychedelics bioethics literature, such as the emphasis on <i>mental health risks</i> and <i>physical risks</i> in ICDs. Notably, psychedelic-specific codes (e.g., <i>ineffability, therapeutic touch)</i> did not appear as frequently in ICDs.</p><p><strong>Conclusions: </strong>Scholars in psychedelic bioethics have called for the inclusion of a variety of potential risks and benefits in ICDs. It will be important to continue debating which elements are worth including in ICDs such that potential research participants are presented with the most salient factors relevant to their decision about joining a study. We provide a table of best practices applied by our sample of ICDs.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"247-266"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144650866","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}
引用次数: 0
Whose Autonomy Matters? Using Relational Autonomy to Analyze Caregiver Roles in Decision-Making for Cancer Clinical Trials. 谁的自主权重要?利用关系自主分析护理人员在癌症临床试验决策中的作用。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-10-28 DOI: 10.1080/23294515.2025.2576829
Eric C Blackstone, Susan R Mazanec, Barbara J Daly, Jennifer A Dorth, Alberto J Montero, Mark P Aulisio, Patricia T Brandt, Sana Loue
{"title":"Whose Autonomy Matters? Using Relational Autonomy to Analyze Caregiver Roles in Decision-Making for Cancer Clinical Trials.","authors":"Eric C Blackstone, Susan R Mazanec, Barbara J Daly, Jennifer A Dorth, Alberto J Montero, Mark P Aulisio, Patricia T Brandt, Sana Loue","doi":"10.1080/23294515.2025.2576829","DOIUrl":"10.1080/23294515.2025.2576829","url":null,"abstract":"<p><strong>Background: </strong>Participation in a therapeutic clinical trial can be a challenging decision for patients with cancer and their family caregivers. Despite the implications of clinical trials for caregivers, there is little empirical research about how caregivers participate in clinical trial decision-making. This qualitative study sought to identify how caregivers view their role in these decisions and the attitudes and experiences of clinical trial staff regarding inclusion of caregivers in the informed consent process.</p><p><strong>Methods: </strong>We performed four focus groups-two with clinical trial staff and two with caregivers of patients offered a cancer clinical trial-followed by 15 semi-structured interviews with caregivers. Focus group results informed interview guide development. Transcripts were analyzed using an abductive approach to content analysis, incorporating the theory of relational autonomy.</p><p><strong>Results: </strong>Caregivers viewed their role as enhancing patient autonomy by helping to interpret clinical trial information and acting as a sounding board. They expressed ambivalence regarding the appropriate degree of influence caregivers should have in the final decision and were cautious not to overly sway patients. Clinical trial staff viewed caregivers as highly influential in decision-making and vital to supporting patient adherence to the study protocol. Caregiver relationships with the oncologist and research staff were influential in their perception of the benefits of the clinical trial and comfort with their loved one participating.</p><p><strong>Conclusions: </strong>Caregivers' key role in facilitating clinical trial decision-making and protocol adherence merits further attention from bioethicists and researchers. Uncertainty regarding their appropriate decisional role highlights the need for assessment of shared decision-making (SDM) preferences to include caregivers in addition to the traditional patient-physician dyad. Future research should develop and test SDM tools incorporating relational autonomy to identify appropriate decisional roles based on patient-caregiver relationship dynamics and values.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"267-276"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12721408/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145379232","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}
引用次数: 0
Patients' Views on Paying to Participate in Clinical Trials. 患者对付费参加临床试验的看法。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-07-03 DOI: 10.1080/23294515.2025.2526325
Nyiramugisha Niyibizi, Tekiah McClary, Margie Dixon, April Liao, Candace D Speight, Ayannah Lang, Neal W Dickert, Rebecca D Pentz
{"title":"Patients' Views on Paying to Participate in Clinical Trials.","authors":"Nyiramugisha Niyibizi, Tekiah McClary, Margie Dixon, April Liao, Candace D Speight, Ayannah Lang, Neal W Dickert, Rebecca D Pentz","doi":"10.1080/23294515.2025.2526325","DOIUrl":"10.1080/23294515.2025.2526325","url":null,"abstract":"<p><strong>Background: </strong>Clinical trials of medical therapies are critical for the advancement of care and are expensive. Sometimes, the costs of study drugs are not covered by insurance or the sponsor, and trial participants bear the costs. Participant costs in trials have been ethically controversial; review boards must decide whether to approve these trials and how to address costs. Because little is known about how participants view these costs, we evaluated patients' perspectives about being asked to pay for drugs in a clinical trial.</p><p><strong>Methods: </strong>We interviewed 33 patients recruited from oncology and cardiology clinics. Interviews included two hypothetical scenarios of trials involving costs: (1) a randomized trial of two current medications with moderate but different out-of-pocket costs; and (2) a trial involving a more expensive investigational drug. Patients were asked to share reactions, concerns, preferences about being approached, and what should happen if removed from the trial due to safety concerns.</p><p><strong>Results: </strong>Patients expressed a variety of concerns and expectations associated with being asked to bear trial costs, as well as suggestions to reduce costs to research participants. Concerns included the study drug expense, fairness of asking research participants to bear study costs, and that disadvantaged individuals could be excluded. Despite sharing these concerns, patients prioritized autonomy in allowing patients to decide whether to participate, felt that \"pay-to-participate\" trials should be allowed to occur, and thought potential benefits from trial interventions, along with personal financial situation, would drive participation decisions.</p><p><strong>Conclusions: </strong>Despite mixed reactions about being asked to pay for study drugs, the majority of patients felt that people should not be prevented from having the option to participate and thus that these trials should not be prohibited. Continued understanding of patient views of research participation and the costs involved can guide how review boards and researchers address these trials.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"232-239"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12233191/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144561439","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}
引用次数: 0
Development and Validation of a Stakeholder-Driven, Self-Contained Electronic Informed Consent Platform for Trio-Based Genomic Research Studies. 开发和验证一个利益相关者驱动的,独立的电子知情同意平台,用于基于三方的基因组研究。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-06-23 DOI: 10.1080/23294515.2025.2497756
Bethany Y Norton, James Liu, Sara A Lewis, Helen Magee, Tyler N Kruer, Rachael Dinh, Somayeh Bakhtiari, Sandra H Nordlie, Sheetal Shetty, Jennifer Heim, Yumi Nishiyama, Jorge Arango, Darcy Johnson, Lee Seabrooke, Mitchell Shub, Robert Rosenberg, Michele Shusterman, Stephen Wisniewski, Blair Cooper, Erin Rothwell, Michael C Fahey, M Wade Shrader, Nancy Lennon, Joyce Oleszek, Wendy Pierce, Hannah Fleming, Mohan Belthur, Jennifer Tinto, Garey Noritz, Laurie Glader, Kelsey Steffen, William Walker, Deborah Grenard, Bhooma Aravamuthan, Kristie Bjornson, Malin Joseph, Paul Gross, Michael C Kruer
{"title":"Development and Validation of a Stakeholder-Driven, Self-Contained Electronic Informed Consent Platform for Trio-Based Genomic Research Studies.","authors":"Bethany Y Norton, James Liu, Sara A Lewis, Helen Magee, Tyler N Kruer, Rachael Dinh, Somayeh Bakhtiari, Sandra H Nordlie, Sheetal Shetty, Jennifer Heim, Yumi Nishiyama, Jorge Arango, Darcy Johnson, Lee Seabrooke, Mitchell Shub, Robert Rosenberg, Michele Shusterman, Stephen Wisniewski, Blair Cooper, Erin Rothwell, Michael C Fahey, M Wade Shrader, Nancy Lennon, Joyce Oleszek, Wendy Pierce, Hannah Fleming, Mohan Belthur, Jennifer Tinto, Garey Noritz, Laurie Glader, Kelsey Steffen, William Walker, Deborah Grenard, Bhooma Aravamuthan, Kristie Bjornson, Malin Joseph, Paul Gross, Michael C Kruer","doi":"10.1080/23294515.2025.2497756","DOIUrl":"10.1080/23294515.2025.2497756","url":null,"abstract":"<p><strong>Background: </strong>Increasingly long and complex informed consents have yielded studies demonstrating comparatively low participant <i>understanding</i> and <i>satisfaction</i> with traditional face-to-face approaches. In parallel, interest in electronic consents for clinical and research genomics has steadily increased, yet limited data are available for trio-based genomic discovery studies. We describe the design, development, implementation, and validation of an electronic iConsent application for trio-based genomic research deployed to support genomic studies of cerebral palsy.</p><p><strong>Methods: </strong>iConsent development incorporated stakeholder perspectives including researchers, patient advocates, institutional review board members, and genomic data-sharing considerations. The iConsent platform integrated principles derived from prior electronic consenting research and elements of multimedia learning theory. Participant understanding was assessed in an interactive teachback format. The iConsent application achieved nine of ten proposed desiderata for effective patient-focused electronic consenting for genomic research.</p><p><strong>Results: </strong>Overall, participants demonstrated high <i>understanding</i> and <i>retention</i> of key human subjects considerations. Enrollees reported high levels of <i>satisfaction</i> with the iConsent, and we found that participant <i>understanding</i>, iConsent <i>clarity</i>, <i>privacy protections</i>, and <i>study goal explanations</i> were associated with overall <i>satisfaction</i>.</p><p><strong>Conclusions: </strong>Although opportunities exist to optimize iConsent, we show that such an approach is feasible, can satisfy multiple stakeholder requirements, and can realize high participant <i>satisfaction</i> and <i>understanding</i> while increasing study reach.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"213-224"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12616543/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144477064","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}
引用次数: 0
Mapping the Landscape of Medical Venture Philanthropy. 绘制医疗风险慈善事业的景观。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-10-28 DOI: 10.1080/23294515.2025.2576835
Megan M Shen, Justin T Clapp, Holly Fernandez Lynch, Matthew S McCoy
{"title":"Mapping the Landscape of Medical Venture Philanthropy.","authors":"Megan M Shen, Justin T Clapp, Holly Fernandez Lynch, Matthew S McCoy","doi":"10.1080/23294515.2025.2576835","DOIUrl":"10.1080/23294515.2025.2576835","url":null,"abstract":"<p><strong>Background: </strong>A number of patient organizations have recently embraced venture philanthropy, a model of patient advocacy that purports to use practices from venture capitalism in pursuit of philanthropic goals. However, a clear understanding of what venture philanthropy entails and what these organizations do remains elusive, hindering efforts to assess ethical implications of the model's growth.</p><p><strong>Methods: </strong>We conducted a qualitative content analysis of self-reported profiles of 130 organizations in an affinity network promoting principles of venture philanthropy. We analyzed organizations' research goals, funding strategies, activities, and patient engagement efforts.</p><p><strong>Results: </strong>Despite finding substantial variation in age, revenue, and disease focus, we identified shared assumptions and approaches that represent defining characteristics of venture philanthropy. First, organizations consistently present facilitating the development of new therapies as the most urgent need for patients. Second, organizations participate in financing and managing research across the development pipeline, rather than focusing on basic research as many patient organizations historically have done. Third, organizations seek to position themselves within established research and drug development networks, fostering collaborative relationships with key stakeholders, including pharmaceutical companies. We also find that some of the most transformative practices associated with venture philanthropy, such as direct investment in for-profit companies, remain relatively uncommon.</p><p><strong>Conclusions: </strong>Venture philanthropy represents an evolution in the ambitions and activities of patient organizations, with organizations becoming more fully enmeshed in the drug development process. Our findings raise ethical questions about how patient organizations conceptualize and advance patient interests and about tradeoffs inherent to the venture philanthropy model.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"286-296"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145379236","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}
引用次数: 0
Survey of OB/GYN Residents Knowledge and Practice of Trauma Informed Care. 妇产科住院医师创伤知情护理知识与实践调查
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-04-30 DOI: 10.1080/23294515.2025.2497757
Lauren Stokes, Adriane Burgess, Paul Burcher
{"title":"Survey of OB/GYN Residents Knowledge and Practice of Trauma Informed Care.","authors":"Lauren Stokes, Adriane Burgess, Paul Burcher","doi":"10.1080/23294515.2025.2497757","DOIUrl":"10.1080/23294515.2025.2497757","url":null,"abstract":"<p><strong>Background: </strong>There is a high prevalence of a history of traumatic experiences among those seeking obstetric/gynecologic care. OB/GYN clinicians must use trauma-informed care practices to avoid re-traumatization and to provide supportive care. The objective of this study was to describe the knowledge and use of trauma-informed care practices by OB/GYN residents in the outpatient setting.</p><p><strong>Methods: </strong>A descriptive research design was used. In February 2022, an email with a link to an electronic survey was sent to US OB/GYN residency program directors <i>via</i> a listserv. OB/GYN program directors were asked to forward the survey to residents in their program. The survey included closed-response questions, some of which were Likert scale, to assess the frequency of use of certain trauma-informed care practices during the provision of pelvic examinations.</p><p><strong>Results: </strong>Seventy US OB/GYN residents responded to the survey. Only half of residents surveyed reported that they practiced trauma-informed care and half reported either not receiving education or were not sure if they had training on the subject. Additionally, half of the respondents were unaware of the ACOG Committee Opinion 825: Care of Patients with History of Trauma.</p><p><strong>Conclusion: </strong>There was limited use of trauma-informed care practices among OB/GYN residents in this study. Considering the high prevalence of traumatic experiences among individuals seeking gynecologic care, a framework for trauma-informed pelvic exams should be included in the residency curriculum and applied universally.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"225-231"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144014337","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}
引用次数: 0
Should Physicians Take the Rap? Normative Analysis of Clinician Perspectives on Responsible Use of 'Black Box' AI Tools. 医生应该承担责任吗?临床医生对负责任地使用“黑匣子”人工智能工具的观点的规范分析。
AJOB Empirical Bioethics Pub Date : 2025-10-01 Epub Date: 2025-05-12 DOI: 10.1080/23294515.2025.2497755
Ben H Lang, Kristin Kostick-Quenet, Jared N Smith, Meghan Hurley, Rita Dexter, Jennifer Blumenthal-Barby
{"title":"Should Physicians Take the Rap? Normative Analysis of Clinician Perspectives on Responsible Use of 'Black Box' AI Tools.","authors":"Ben H Lang, Kristin Kostick-Quenet, Jared N Smith, Meghan Hurley, Rita Dexter, Jennifer Blumenthal-Barby","doi":"10.1080/23294515.2025.2497755","DOIUrl":"10.1080/23294515.2025.2497755","url":null,"abstract":"<p><strong>Background: </strong>Increasing interest in deploying artificial intelligence tools in clinical contexts has raised several ethical questions of both normative and empirical interest. One such question in the literature is whether \"responsibility gaps\" (r-gaps) are created when clinicians utilize or rely on such tools for providing care, and if so, what to do about them. These gaps are particularly likely to arise when using opaque, \"black box\" AI tools. Compared to normative and legal analysis of AI-generated responsibility gaps in health care, little is known, empirically, about health care providers views on this issue. The present study examines clinician perspectives on this issue in the context of black box AI decisional support systems (BBAI-DSS) in advanced heart failure.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with 20 clinicians (14 cardiologists and 6 LVAD nurse coordinators). Interviews were transcribed, coded, and thematically analyzed for salient themes. All study procedures were approved by local IRB.</p><p><strong>Results: </strong>We found that <i>all</i> clinicians voiced that, if someone were responsible for the use and outcomes of black box AI, it would be physicians. We compare clinician perspectives on the existence of r-gaps and their impact on responsibility for errors or adverse outcomes when BBAI-DSS tools are used against a taxonomy from the literature, finding some clinicians acknowledging an r-gap and others denying it or its relevance in medical decision-making.</p><p><strong>Conclusion: </strong>Clinicians varied in their view about the existence of r-gaps but were united in their ascriptions of physician responsibility for the use of BBAI-DSS in clinical care. It was unclear at times whether these were descriptive or normative judgments (i.e., is it merely inevitable physicians will be responsible, or is it morally appropriate that they be held responsible?) or both. We discuss the likely normative inadequacy of such a conception of physician responsibility for BBAI tool use.</p>","PeriodicalId":38118,"journal":{"name":"AJOB Empirical Bioethics","volume":" ","pages":"201-212"},"PeriodicalIF":0.0,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12353763/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144042646","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}
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