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AMA journal of ethics最新文献

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A Comic of RBCs and Other EHR TMI. 红细胞和其他电子病历TMI的漫画。
AMA journal of ethics Pub Date : 2025-11-01 DOI: 10.1001/amajethics.2025.821
Teddie Bernard
{"title":"A Comic of RBCs and Other EHR TMI.","authors":"Teddie Bernard","doi":"10.1001/amajethics.2025.821","DOIUrl":"10.1001/amajethics.2025.821","url":null,"abstract":"<p><p>Electronic health records (EHRs) enable patients to access their health records anytime, from anywhere with internet connectivity. Yet not all Americans benefit from these innovations. EHRs can be hard to access for people with a range of disabilities. This lack of access perpetuates inequity and, thus, demands ethical and legal attention. Some federal laws and regulations require accessible EHRs, but even these protections can fall short. This article argues that more clearly defined obligations for EHR developers and clinicians are necessary.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 11","pages":"E821-822"},"PeriodicalIF":0.0,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439731","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
How Could Legal Standards Promote Equitable Access to EHRs? 法律标准如何促进电子病历的公平获取？
AMA journal of ethics Pub Date : 2025-11-01 DOI: 10.1001/amajethics.2025.815
Jessica L Roberts
{"title":"How Could Legal Standards Promote Equitable Access to EHRs?","authors":"Jessica L Roberts","doi":"10.1001/amajethics.2025.815","DOIUrl":"10.1001/amajethics.2025.815","url":null,"abstract":"<p><p>Electronic health records (EHRs) enable patients to access their health records anytime, from anywhere with internet connectivity. Yet not all Americans benefit from these innovations. EHRs can be hard to access for people with a range of disabilities. This lack of access perpetuates inequity and, thus, demands ethical and legal attention. Some federal laws and regulations require accessible EHRs, but even these protections can fall short. This article argues that more clearly defined obligations for EHR developers and clinicians are necessary.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 11","pages":"E815-820"},"PeriodicalIF":0.0,"publicationDate":"2025-11-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145439737","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
What Are Ethical Merits and Drawbacks of Viewing "Medical Mysteries" as Human Subject Research? 将“医学之谜”视为人体实验研究，在伦理上有何优劣？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.718
Tom A Doyle, Erin Conboy
{"title":"What Are Ethical Merits and Drawbacks of Viewing \"Medical Mysteries\" as Human Subject Research?","authors":"Tom A Doyle, Erin Conboy","doi":"10.1001/amajethics.2025.718","DOIUrl":"10.1001/amajethics.2025.718","url":null,"abstract":"<p><p>Patient-subjects' participation in an Undiagnosed Diseases Network (UDN) protocol can afford access to innovative diagnostic techniques, especially in genomic medicine, which can shorten the time it takes to accurately diagnose a so-called \"medical mystery.\" But UDN research processes can be complex and involve many variables, which can suggest to some patient-subjects that having enrolled in a UDN protocol was not worthwhile. This commentary on a hypothetical case rife with diagnostic ambiguity offers a dynamic model of consent that can both facilitate prospective UDN patient-subjects' assessment of potential risks and benefits of participating in diagnostic research and be a source of community engagement.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E718-725"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201574","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
Decision-Making About Biospecimens. 关于生物标本的决策。
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.761
Anaid Kassidy Corona-Andaverde
{"title":"Decision-Making About Biospecimens.","authors":"Anaid Kassidy Corona-Andaverde","doi":"10.1001/amajethics.2025.761","DOIUrl":"10.1001/amajethics.2025.761","url":null,"abstract":"<p><p>For persons living with an undiagnosed disease and their families, finding an accurate diagnosis can be a long and complex process. Having a rare condition that goes undiagnosed for a long period constitutes a significant part of these patients' disease burden. This article suggests the importance of international collaborative approaches to rare disease diagnostic practices and describes how the Undiagnosed Diseases Network can draw on best practices and clinical networks to motivate patient-participants' access to rare disease diagnoses.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E761-763"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201645","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
What Is the Nature and Scope of Physicians' Duties of Care to Patients Without a Diagnosis? 医生对未确诊病人的护理责任的性质和范围是什么？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.726
April Hall, Bryn D Webb, M Stephen Meyn
{"title":"What Is the Nature and Scope of Physicians' Duties of Care to Patients Without a Diagnosis?","authors":"April Hall, Bryn D Webb, M Stephen Meyn","doi":"10.1001/amajethics.2025.726","DOIUrl":"10.1001/amajethics.2025.726","url":null,"abstract":"<p><p>Patients whose conditions are undiagnosed face stress and limited, delayed access to interventions that address their specific needs. This commentary on a hypothetical case describes key ethical values that tend to conflict when clinicians try to care for patients with undiagnosed conditions and underscores the need for equitable, precise care plans when the sources and causes of patients' illness experiences are yet unknown.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E726-732"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201626","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
What Matters Ethically About How the UDN Has Changed Since Its Inception? UDN自成立以来的变化在伦理上有什么关系？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.756
David A Pearce, Elena-Alexandra Tataru
{"title":"What Matters Ethically About How the UDN Has Changed Since Its Inception?","authors":"David A Pearce, Elena-Alexandra Tataru","doi":"10.1001/amajethics.2025.756","DOIUrl":"10.1001/amajethics.2025.756","url":null,"abstract":"<p><p>For persons living with an undiagnosed disease and their families, finding an accurate diagnosis can be a long and complex process. Having a rare condition that goes undiagnosed for a long period constitutes a significant part of these patients' disease burden. This article suggests the importance of international collaborative approaches to rare disease diagnostic practices and describes how the Undiagnosed Diseases Network can draw on best practices and clinical networks to motivate patient-participants' access to rare disease diagnoses.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E756-760"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201614","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
What Should Be Roles of Industry and the Public in Diagnostic Research? 工业和公众在诊断研究中应该扮演什么角色？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.743
Barbara K Redman
{"title":"What Should Be Roles of Industry and the Public in Diagnostic Research?","authors":"Barbara K Redman","doi":"10.1001/amajethics.2025.743","DOIUrl":"10.1001/amajethics.2025.743","url":null,"abstract":"<p><p>Despite legislative attention from Congress in the 1980s, diagnostic research on rare diseases is not lucrative enough to garner sufficient private funding. The Undiagnosed Diseases Network supports diagnostic research and intervention innovation for patients with undiagnosed or rare conditions. This article considers structural conflict endemic among values seen as promoting corporate fiscal policy (eg, investment return, market share dominance) and values traditionally seen as motivating good public health policy (eg, rescue, non-abandonment). It argues that taxpayer investment in pharmaceutical innovation should be protected by expanding public understanding of conflicts of interest.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E743-749"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201631","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
How Should Students and Trainees Be Taught to Support Patients With Undiagnosed Conditions? 如何教学生和实习生支持未确诊疾病的患者？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.733
Mylynda B Massart, Erika N Dreikorn
{"title":"How Should Students and Trainees Be Taught to Support Patients With Undiagnosed Conditions?","authors":"Mylynda B Massart, Erika N Dreikorn","doi":"10.1001/amajethics.2025.733","DOIUrl":"10.1001/amajethics.2025.733","url":null,"abstract":"<p><p>Patients with undiagnosed conditions often experience frustration and lose trust in health care. This article suggests how faculty in academic health centers can prepare their students and trainees to respond with care to the vulnerabilities and needs of patients seeking accurate diagnoses. Specifically, this article suggests the importance of clinicians' roles in validating patients' knowledge claims about their illness experiences. Such validation during clinical encounters can happen when clinicians prioritize symptom management, acknowledge uncertainty as an emotionally painful part of a patient's illness experiences, articulate limitations of clinical knowledge, and express values such as care, partnership, and compassion in their relationships with patients.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E733-736"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201621","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
Is the UDN N-of-1 Enterprise Ethically Justifiable? UDN N-of-1企业在道德上是否合理？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.737
Gianna Gordon, Lisa Kearns
{"title":"Is the UDN N-of-1 Enterprise Ethically Justifiable?","authors":"Gianna Gordon, Lisa Kearns","doi":"10.1001/amajethics.2025.737","DOIUrl":"10.1001/amajethics.2025.737","url":null,"abstract":"<p><p>The Undiagnosed Diseases Network is a national consortium of clinicians and researchers working to promote diagnostic research and accurately diagnose patients with rare diseases, many of whose conditions have long gone undiagnosed. This endeavor's importance should not, however, stop us from asking good ethics and policy questions about whether and when N-of-1 diagnostic research is justifiable. This article poses and considers questions about informed consent, information privacy, and justice in this very specific kind of human subjects research.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E737-742"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201616","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
According to Which Criteria Should the Undiagnosed Diseases Network's Value Be Assessed? 未诊断疾病网络的价值应以何种标准评估？
AMA journal of ethics Pub Date : 2025-10-10 DOI: 10.1001/amajethics.2025.750
Meghan Halley, Holly Tabor
{"title":"According to Which Criteria Should the Undiagnosed Diseases Network's Value Be Assessed?","authors":"Meghan Halley, Holly Tabor","doi":"10.1001/amajethics.2025.750","DOIUrl":"10.1001/amajethics.2025.750","url":null,"abstract":"<p><p>The Undiagnosed Diseases Network (UDN) exists at an intersection of diagnostic research and clinical care and has 2 main goals: to advance diagnostic science and to facilitate accurate diagnoses in individual patient-participants with rare conditions or so-called \"medical mysteries.\" The value of the UDN's translational research and clinical application model and of the results it produces derive from whether and to what extent the UDN achieves its 2 goals. This article considers criteria currently used to assess achievement of those goals, identifies their merits and drawbacks, and offers strategies by which the UDN might further advance diagnostic science and individual patient-participants' interests.</p>","PeriodicalId":38034,"journal":{"name":"AMA journal of ethics","volume":"27 10","pages":"E750-755"},"PeriodicalIF":0.0,"publicationDate":"2025-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12818355/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201662","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
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