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Severity at the Gates: Or Why Prevention is the Aim of Reproductive Genetic Carrier Screening. 严重程度在大门：或为什么预防是生殖遗传载体筛查的目的。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-10-16 DOI: 10.1080/15265161.2026.2741288
Hafez Ismaili M'hamdi
{"title":"Severity at the Gates: Or Why Prevention is the Aim of Reproductive Genetic Carrier Screening.","authors":"Hafez Ismaili M'hamdi","doi":"10.1080/15265161.2026.2741288","DOIUrl":"https://doi.org/10.1080/15265161.2026.2741288","url":null,"abstract":"<p><p>Reproductive autonomy is usually described as the aim of publicly funded reproductive genetic carrier screening. I argue that this misdescribes the practice. These programs do not include conditions because any information might support choice. They include them because severity sets the scope. The aim of these programs, therefore, is prevention: not preventing the birth of particular persons, but offering a preventive response to the serious suffering associated with some severe inherited conditions. Reproductive autonomy, however, is the legitimate means by which a liberal program may pursue that aim, through information, counseling and voluntary decision making. That pursuit must satisfy what I call a liberal proviso, so that prevention does not become pressure, stigma or eugenic state steering. Naming prevention also enriches the disability critique. It makes both inclusion and exclusion morally visible and warranting justification, since both express judgments about which forms of suffering warrant collective response.</p>","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":" ","pages":"1-12"},"PeriodicalIF":17.6,"publicationDate":"2026-10-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"149197659","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Fairness and Bias Management in Health AI: consensus-Based Recommendations for Best Practices Across the AI Lifecycle. 卫生人工智能中的公平与偏见管理：基于共识的人工智能全生命周期最佳实践建议。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-10-01 Epub Date: 2026-06-10 DOI: 10.1080/15265161.2026.2677391
Merage Ghane, Matthew Elmore, Irene Dankwa-Mullan, Shawn Stapleton, Kellie Owens, Sana Khalid, Allie Delonay, Alaa Youssef, Mwisa Chisunka, Chevon Rariy, Ariadna Vargas, Julio Bonis, Nicoleta J Economou-Zavlanos, David Talby
{"title":"Fairness and Bias Management in Health AI: consensus-Based Recommendations for Best Practices Across the AI Lifecycle.","authors":"Merage Ghane, Matthew Elmore, Irene Dankwa-Mullan, Shawn Stapleton, Kellie Owens, Sana Khalid, Allie Delonay, Alaa Youssef, Mwisa Chisunka, Chevon Rariy, Ariadna Vargas, Julio Bonis, Nicoleta J Economou-Zavlanos, David Talby","doi":"10.1080/15265161.2026.2677391","DOIUrl":"10.1080/15265161.2026.2677391","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":" ","pages":"10-15"},"PeriodicalIF":17.6,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148213264","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community. 对谁合理？根据自闭症社区的研究相关问题重新思考知情同意披露。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-10-01 Epub Date: 2026-03-02 DOI: 10.1080/15265161.2026.2632012
Manisha Khatiwada, Dana Howard, Tema Krempley, Katherine Walton, Crystal Williams, Abraham David Graber
{"title":"Reasonable to Whom? Rethinking Informed Consent Disclosures in Light of the Research Related Concerns of the Autistic Community.","authors":"Manisha Khatiwada, Dana Howard, Tema Krempley, Katherine Walton, Crystal Williams, Abraham David Graber","doi":"10.1080/15265161.2026.2632012","DOIUrl":"10.1080/15265161.2026.2632012","url":null,"abstract":"<p><p>Information disclosure during the informed consent process presents a dilemma. If too little information is presented, participants are unable to make an informed decision. Exhaustive disclosure is, however, a practical impossibility. In the United States, this dilemma was historically navigated in the research context by requiring that disclosure include enumerated items: the purpose of the research, potential risks, etc. In 2018, federal guidelines were updated to require that disclosure adhere to the reasonable person standard, whereby participants must be given all information that an \"average\" person would want to know. Drawing on the Autistic community's unique concerns regarding research, we argue that, because of its emphasis on the informational wants of the \"average\" person, the reasonable person standard systematically fails to meet the informational needs of (many) people from minoritized populations. We argue for an individualized understanding of the reasonable person standard and provide recommendations for research teams.</p>","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":" ","pages":"16-29"},"PeriodicalIF":17.6,"publicationDate":"2026-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC13238933/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147328048","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","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 Ethics of Growth-Promoting Pharmaceuticals for Achondroplasia. 促生长药物治疗软骨发育不全的伦理问题。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-09 DOI: 10.1080/15265161.2026.2710267
Kathryn Guo, Sinead Prince, G Owen Schaefer, Saumya Shekhar Jamuar, Ravi Savarirayan, Julian Savulescu, Serene Ong
{"title":"The Ethics of Growth-Promoting Pharmaceuticals for Achondroplasia.","authors":"Kathryn Guo, Sinead Prince, G Owen Schaefer, Saumya Shekhar Jamuar, Ravi Savarirayan, Julian Savulescu, Serene Ong","doi":"10.1080/15265161.2026.2710267","DOIUrl":"https://doi.org/10.1080/15265161.2026.2710267","url":null,"abstract":"<p><p>In 2021, vosoritide became the first pharmaceutical approved to treat the pathophysiology of achondroplastic dwarfism. It has generated significant ethical debate. Proponents emphasize its potential to improve quality of life and functional independence, whereas critics raise concerns about pathologizing human variation, eroding cultural identity, and limiting children's autonomy. The drug has an extremely high cost (approximately $300,000 USD per year per patient) and is non-lifesaving, further provoking questions of distributive justice and public funding. This paper examines the key ethical issues surrounding vosoritide, including the distinction between its medical and social benefits, its potential impact on identity, the inclusion of disability communities in study design, the limits of parental decision-making, and the justification for public reimbursement. We argue that ethical evaluation requires robust empirical evidence on both medical and quality-of-life outcomes, inclusion of disability communities in the research process, and long-term psychosocial follow-up and mandated data sharing of treated children.</p>","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":" ","pages":"1-18"},"PeriodicalIF":17.6,"publicationDate":"2026-09-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148914206","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Renegotiating the Nudge: Choice Architecture, AI, and the Terms of Influence in Dementia Care. 重新协商推动：选择架构、人工智能和痴呆症护理中的影响条款。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2710262
Dov Greenbaum
{"title":"Renegotiating the Nudge: Choice Architecture, AI, and the Terms of Influence in Dementia Care.","authors":"Dov Greenbaum","doi":"10.1080/15265161.2026.2710262","DOIUrl":"https://doi.org/10.1080/15265161.2026.2710262","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"173-175"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834582","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Shorter Is Better, Except When It Isn't: the Ethics of Antibiotic Duration. 越短越好，除非它不是：抗生素持续时间的伦理。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2709536
Chris Degeling, Jane Williams, Andrew Bonney, Judy Mullan, Caitlin Keighly
{"title":"Shorter Is Better, Except When It Isn't: the Ethics of Antibiotic Duration.","authors":"Chris Degeling, Jane Williams, Andrew Bonney, Judy Mullan, Caitlin Keighly","doi":"10.1080/15265161.2026.2709536","DOIUrl":"https://doi.org/10.1080/15265161.2026.2709536","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"97-100"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834588","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Honouring Dissent Without Feeding Surveillance Systems. 在不助长监控系统的情况下尊重异议。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2710268
Ravi Soni, Jean-Christophe Bélisle-Pipon
{"title":"Honouring Dissent Without Feeding Surveillance Systems.","authors":"Ravi Soni, Jean-Christophe Bélisle-Pipon","doi":"10.1080/15265161.2026.2710268","DOIUrl":"https://doi.org/10.1080/15265161.2026.2710268","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"164-167"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834593","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Skin in the Game: Antibiotic Stewardship Within Dermatology. 游戏中的皮肤：皮肤病学中的抗生素管理。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2709566
Sophie G Tillotson, Jamie B Harris, Lauren B Solberg
{"title":"Skin in the Game: Antibiotic Stewardship Within Dermatology.","authors":"Sophie G Tillotson, Jamie B Harris, Lauren B Solberg","doi":"10.1080/15265161.2026.2709566","DOIUrl":"https://doi.org/10.1080/15265161.2026.2709566","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"123-126"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834602","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Hospital Bioethics: Ample Legal Foundations to Articulate Organizational Obligations. 医院生命伦理学：阐明组织义务的充足法律基础。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2709542
Thaddeus Mason Pope
{"title":"Hospital Bioethics: Ample Legal Foundations to Articulate Organizational Obligations.","authors":"Thaddeus Mason Pope","doi":"10.1080/15265161.2026.2709542","DOIUrl":"https://doi.org/10.1080/15265161.2026.2709542","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"35-37"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834646","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Ethical Obligations of Hospitals in the Post-Dobbs Landscape. 后多布斯时代医院的道德义务。
IF 17.6 1区 哲学
American Journal of Bioethics Pub Date : 2026-09-01 Epub Date: 2026-08-27 DOI: 10.1080/15265161.2026.2709561
Mara Buchbinder, Kavita S Arora, Erika L Sabbath
{"title":"The Ethical Obligations of Hospitals in the Post-<i>Dobbs</i> Landscape.","authors":"Mara Buchbinder, Kavita S Arora, Erika L Sabbath","doi":"10.1080/15265161.2026.2709561","DOIUrl":"https://doi.org/10.1080/15265161.2026.2709561","url":null,"abstract":"","PeriodicalId":50962,"journal":{"name":"American Journal of Bioethics","volume":"26 9","pages":"63-65"},"PeriodicalIF":17.6,"publicationDate":"2026-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"148834736","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":1,"RegionCategory":"哲学","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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