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The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good. 基因数据市场：学术/工业研究伙伴关系的公共利益的制度治理。
The American Journal of Bioethics Pub Date : 2025-09-23 DOI: 10.1080/15265161.2025.2554770
Kayte Spector-Bagdady
{"title":"The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.","authors":"Kayte Spector-Bagdady","doi":"10.1080/15265161.2025.2554770","DOIUrl":"https://doi.org/10.1080/15265161.2025.2554770","url":null,"abstract":"The Trump Administration's cuts to research funding and opposition to diversity, equity, and inclusion is destabilizing academic research. These attacks coincide with pointed government support for the private sector. But the conceptualization of academic versus private sector health research has historically been a false binary. Drawing on mixed methods research, this paper examines the genomic data market as an example of advantages and challenges of commercializing academic expertise. It also highlights the structural downsides of researchers individually navigating industry partnerships. While academia is currently being put in the unenviable position of being more likely to need the private sector to conduct research, with less federal funding to offer in exchange, structural pain points have existed for decades. This is an opportunity for academia to harness its powers of expertise and collective action to develop institutional policy to ensure academic/industry research is beneficial to the public health and diverse patient communities.","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"80 1","pages":"1-15"},"PeriodicalIF":0.0,"publicationDate":"2025-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145117038","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
Justifying Organ Allocation Out of Sequence. 证明器官分配不合顺序。
The American Journal of Bioethics Pub Date : 2025-09-19 DOI: 10.1080/15265161.2025.2554778
Andrew Courtwright
{"title":"Justifying Organ Allocation Out of Sequence.","authors":"Andrew Courtwright","doi":"10.1080/15265161.2025.2554778","DOIUrl":"https://doi.org/10.1080/15265161.2025.2554778","url":null,"abstract":"The rise of Allocation Out of Sequence (AOOS) in organ transplantation in the United States has raised significant ethical concerns. By the end of 2024, 20% of kidneys were transplanted out of the standard match sequence, drawing regulatory scrutiny. Critics argue that AOOS fails to prevent organ nonuse, does not address underlying inefficiencies in organ allocation, lacks transparency, and worsens transplant-related disparities. In this paper, I outline the factors contributing to the expansion of AOOS and evaluate the normative arguments for and against its use. I suggest that the strongest critique of AOOS involves procedural justice. Drawing on a constructivist framework, I argue that AOOS violates the expectation that allocation policies be grounded in collective agreement. I identify considerations that should inform the revision of the AOOS pathway, emphasizing the need for shared norms to ensure procedural legitimacy.","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"37 1","pages":"1-11"},"PeriodicalIF":0.0,"publicationDate":"2025-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145083352","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
When Ethical Principles Conflict: The Ethics of Genetic Confidentiality in Context. 当伦理原则冲突：背景下基因保密的伦理。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543711
Rie Iizuka,Shu Ishida,Tsutomu Sawai
{"title":"When Ethical Principles Conflict: The Ethics of Genetic Confidentiality in Context.","authors":"Rie Iizuka,Shu Ishida,Tsutomu Sawai","doi":"10.1080/15265161.2025.2543711","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543711","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"1 1","pages":"40-42"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078161","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
High Standards: Hiring Fellowship-Trained Clinical Ethics Consultants. 高标准：聘用获得奖学金培训的临床伦理顾问。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543752
Denise M Dudzinski
{"title":"High Standards: Hiring Fellowship-Trained Clinical Ethics Consultants.","authors":"Denise M Dudzinski","doi":"10.1080/15265161.2025.2543752","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543752","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"16 1","pages":"94-96"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078165","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
Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions - When the Law Comes to the Rescue. 遗传与非遗传案件的保密：两个有问题的区别——法律何时来拯救。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543725
Timothé Ménard
{"title":"Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions - When the Law Comes to the Rescue.","authors":"Timothé Ménard","doi":"10.1080/15265161.2025.2543725","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543725","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"71 1","pages":"43-44"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078170","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 to Fix Clinical Ethics Fellowships: Addressing Our Research Imperative. 如何修复临床伦理奖学金：解决我们的研究当务之急。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543721
Joseph J Fins
{"title":"How to Fix Clinical Ethics Fellowships: Addressing Our Research Imperative.","authors":"Joseph J Fins","doi":"10.1080/15265161.2025.2543721","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543721","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"30 1","pages":"67-69"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078173","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
Delivery of Elexacaftor/Tezacaftor/Ivacaftor (ETI) Through Placenta and Then Breastmilk in Cystic Fibrosis: A Clinical Trial Risk-Benefit Analysis. 囊性纤维化患者经胎盘再经母乳给药eleexaftor /Tezacaftor/Ivacaftor (ETI)：一项临床试验风险-收益分析
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543738
Liza Dawson,Benjamin S Wilfond,Andrew Doffie Ray,Liza-Marie Johnson
{"title":"Delivery of Elexacaftor/Tezacaftor/Ivacaftor (ETI) Through Placenta and Then Breastmilk in Cystic Fibrosis: A Clinical Trial Risk-Benefit Analysis.","authors":"Liza Dawson,Benjamin S Wilfond,Andrew Doffie Ray,Liza-Marie Johnson","doi":"10.1080/15265161.2025.2543738","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543738","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"77 1","pages":"97-99"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078193","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
Research and Pregnancy: Re-Envisioning Risk-Benefit Tradeoffs. 研究和怀孕：重新设想风险-收益权衡。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543714
Anne D Lyerly
{"title":"Research and Pregnancy: Re-Envisioning Risk-Benefit Tradeoffs.","authors":"Anne D Lyerly","doi":"10.1080/15265161.2025.2543714","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543714","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"124 1","pages":"110-111"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078194","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
Revisiting Professionalism and Breach of Confidentiality: Are "Neutral" Conditions the Answer? 重新审视专业和违反保密：“中立”条件是答案吗？
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543718
Edward S Dove,Bartha Maria Knoppers
{"title":"Revisiting Professionalism and Breach of Confidentiality: Are \"Neutral\" Conditions the Answer?","authors":"Edward S Dove,Bartha Maria Knoppers","doi":"10.1080/15265161.2025.2543718","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543718","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"1 1","pages":"32-35"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078154","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
Revisiting "Fellowship-Trained": Toward Shared Meaning in Clinical Ethics. 重新审视“奖学金训练”：走向临床伦理学的共享意义。
The American Journal of Bioethics Pub Date : 2025-09-18 DOI: 10.1080/15265161.2025.2543732
Adira Hulkower,Joshua Crites,Cristie Cole Horsburgh,Jessica Ginsberg Rogers,David Michael Vaughan
{"title":"Revisiting \"Fellowship-Trained\": Toward Shared Meaning in Clinical Ethics.","authors":"Adira Hulkower,Joshua Crites,Cristie Cole Horsburgh,Jessica Ginsberg Rogers,David Michael Vaughan","doi":"10.1080/15265161.2025.2543732","DOIUrl":"https://doi.org/10.1080/15265161.2025.2543732","url":null,"abstract":"","PeriodicalId":501008,"journal":{"name":"The American Journal of Bioethics","volume":"56 1","pages":"74-76"},"PeriodicalIF":0.0,"publicationDate":"2025-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145078157","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
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