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Preventive Human Genome Editing and Enhancement: Candidate Criteria for Governance 预防性人类基因组编辑和增强：候选管理标准。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4913
Eric Juengst, Michael A. Flatt, John M. Conley, Arlene Davis, Gail Henderson, Douglas MacKay, Rami Major, Rebecca L. Walker, R. Jean Cadigan
{"title":"Preventive Human Genome Editing and Enhancement: Candidate Criteria for Governance","authors":"Eric Juengst,&nbsp;Michael A. Flatt,&nbsp;John M. Conley,&nbsp;Arlene Davis,&nbsp;Gail Henderson,&nbsp;Douglas MacKay,&nbsp;Rami Major,&nbsp;Rebecca L. Walker,&nbsp;R. Jean Cadigan","doi":"10.1002/hast.4913","DOIUrl":"10.1002/hast.4913","url":null,"abstract":"<p>While somatic cell editing to treat disease is widely accepted, the use of human genome editing for “enhancement” remains contested. Scientists and policy-makers routinely cite the prospect of enhancement as a salient ethical challenge for human genome editing research. If preventive genome editing projects are perceived as pursuing human enhancement, they could face heightened barriers to scientific, public, and regulatory approval. This article outlines what we call “preventive strengthening research” (or “PSR”) to explore, through this example, how working to strengthen individuals’ resistance to disease beyond what biomedicine considers to be the human functional range may be interpreted as pursuing human enhancement. Those involved in developing guidance for PSR will need to navigate the interface between preventive goals and enhancement implications. This article identifies and critiques three of these ideas in the interest of anticipating the wider emergence of PSR and the need for a normative approach for its pursuit. All three “candidate criteria” merit attention, but each also faces challenges that will need to be addressed as further research policy is developed.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"14-23"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565067","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Parity, Poverty, and Physician Aid in Dying: Policy Recommendations for PAD in Light of Social Injustices 均等、贫困与医生临终关怀：从社会不公正角度看临终关怀的政策建议》。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4914
Em Walsh
{"title":"Parity, Poverty, and Physician Aid in Dying: Policy Recommendations for PAD in Light of Social Injustices","authors":"Em Walsh","doi":"10.1002/hast.4914","DOIUrl":"10.1002/hast.4914","url":null,"abstract":"<p>In light of the proposed expansion of eligibility for physician aid in dying (PAD) in Canada to people with psychiatric disorders, there is a new subset of individuals seeking PAD—those with poverty-induced depression. The dominant account defending the expansion is known as the “parity argument.” Defenders of the parity argument maintain that the expansion of PAD to those with psychiatric conditions is needed to reflect that the seriousness of a patient's suffering does not depend on the cause of that suffering. Parity accounts, as they stand, would allow cases of poverty-induced depression to qualify. I raise a moral dilemma that the parity theorist must face considering this new subset of cases—expanding access to PAD, without adequate social protections, could produce more social inequality by aiming to reduce it. I propose six recommendations that policy-makers should consider before expanding PAD given these cases, social injustice, and the social determinants of mental health.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"24-31"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565053","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Moral Nuances in Broad Policies 宽泛政策中的道德细微差别
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4941
Laura Haupt
{"title":"Moral Nuances in Broad Policies","authors":"Laura Haupt","doi":"10.1002/hast.4941","DOIUrl":"https://doi.org/10.1002/hast.4941","url":null,"abstract":"<div>\u0000 \u0000 <p>In the September-October 2024 issue of the <i>Hastings Center Report</i>, two pieces examine attitudes toward and policy on medical aid in dying (MAID). An essay by Anna Elsner and colleagues analyzes terminology, including euphemistic language, used in Canada and other countries to refer to this practice. The authors recommend explicit public discussion of the values at stake in the use of this terminology. An article by Em Walsh concerns a subset of people who could become eligible for MAID under Canada's proposed expansion of eligibility for this assistance: people suffering from poverty-induced depression. Cautioning that the expansion of PAD could exacerbate inequality, Walsh offers six recommendations for policy-makers’ consideration. The issue's lead article, by Eric Juengst and colleagues, focuses on governance issues that could be raised by human genome editing research that aims to strengthen individuals’ resistance to disease beyond what is regarded as the human functional range. Juengst et al. identify and analyze three potential principles that could help policy-makers navigate what can be a blurry line between goals of prevention and enhancement in human genome editing research.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"inside_front_cover"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4941","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142574002","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Johan C. Bester replies: Johan C. Bester 回答。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4917
Johan C. Bester
{"title":"Johan C. Bester replies:","authors":"Johan C. Bester","doi":"10.1002/hast.4917","DOIUrl":"10.1002/hast.4917","url":null,"abstract":"<p>This letter responds to a letter by Moti Gorin in the same issue, September-October 2024, of the <i>Hastings Center Report</i>.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"34-35"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4917","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142564984","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Stef M. Shuster and Meredithe McNamara reply: Stef M. Shuster 和 Meredithe McNamara 回答。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4918
Stef M. Shuster, Meredithe McNamara
{"title":"Stef M. Shuster and Meredithe McNamara reply:","authors":"Stef M. Shuster,&nbsp;Meredithe McNamara","doi":"10.1002/hast.4918","DOIUrl":"10.1002/hast.4918","url":null,"abstract":"<div>\u0000 \u0000 <p>This letter responds to a letter by Moti Gorin in the same issue, September-October 2024, of the <i>Hastings Center Report</i>.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"35"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4918","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565132","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Gender, Pediatric Care, and Evidence 性别、儿科护理和证据。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4916
Moti Gorin
{"title":"Gender, Pediatric Care, and Evidence","authors":"Moti Gorin","doi":"10.1002/hast.4916","DOIUrl":"10.1002/hast.4916","url":null,"abstract":"<div>\u0000 \u0000 <p>This letter responds to the Other Voices commentaries “Troubling Trends in Health Misinformation Related to Gender-Affirming Care,” by Stef M. Shuster and Meredithe McNamara; “Values and Evidence in Gender-Affirming Care,” by Os Keyes and Elizabeth Dietz; “Breaking Binaries: The Critical Need for Feminist Bioethics in Pediatric Gender-Affirming Care,” by Lisa Campo-Engelstein, Grayson Jackson, and Jacob Moses; and “Minors Lack the Autonomy to Consent to Gender-Affirming Care: Best Interests Must Be Primary,” by John C. Bester, in the May-June 2024 issue of the <i>Hastings Center Report</i>.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"34"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4916","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142564931","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Why Aren't There More Whistleblowers? 为什么没有更多的举报人？
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4915
Robert A. Aronowitz
{"title":"Why Aren't There More Whistleblowers?","authors":"Robert A. Aronowitz","doi":"10.1002/hast.4915","DOIUrl":"https://doi.org/10.1002/hast.4915","url":null,"abstract":"<div>\u0000 \u0000 <p>In <i>The Occasional Human Sacrifice: Medical Experimentation and the Price of Saying No</i>, bioethicist Carl Elliot seeks to understand people who blow the whistle on unethical human research projects. The book compares whistleblowers in six scandals, and Elliot's main explanation for why someone becomes a whistleblower is personal honor. Exploring what led to or might have prevented these scandals, Elliot is critical of institutional review boards, and he links research ethics violations to injustices in everyday clinical care and medical training and to power imbalances in medical institutions. Some of the clinical and scientific details in the cases suggest other moral and ethical problems and the increasing irrelevance of the practice-research distinction. Whistleblowers are also needed for the mass experiments that occur when practices diffuse without robust evidence and for the structural inequalities on which American clinical care, teaching, and research depend.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"32-33"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4915","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142573945","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Language Matters: The Semantics and Politics of “Assisted Dying” 语言很重要：辅助死亡 "的语义学与政治学》。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4910
Anna M. Elsner, Charlotte E. Frank, Marc Keller, Jordan O. McCullough, Vanessa Rampton
{"title":"Language Matters: The Semantics and Politics of “Assisted Dying”","authors":"Anna M. Elsner,&nbsp;Charlotte E. Frank,&nbsp;Marc Keller,&nbsp;Jordan O. McCullough,&nbsp;Vanessa Rampton","doi":"10.1002/hast.4910","DOIUrl":"10.1002/hast.4910","url":null,"abstract":"<div>\u0000 \u0000 <p>This essay examines the impact of linguistic choices on the perception and regulation of assisted dying, particularly in Canada. It argues that euphemistic terms like “medical assistance in dying” and its acronym, “MAID,” serve to normalize the practice, potentially obscuring its moral gravity. This contrasts with what is seen in Belgium and the Netherlands, where terms like “euthanasia” are used, as well as in France and the United Kingdom, where terminology remains divisive and contested. By tracing the evolution of these terms and what they reveal about different cultural and legal approaches, this essay sheds light on the politics of language in end-of-life discourses. It suggests that the shift toward euphemistic language reflects a broader discomfort with death that can shape public attitudes and legal frameworks. It calls for a more transparent, philosophically grounded approach to terminology and suggests that continued debate about semantics is necessary to capture the complexities and ethical significance of assisted dying.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"3-7"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4910","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142564986","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Synthetic Health Data: Real Ethical Promise and Peril 合成健康数据：真正的伦理承诺与危险。
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4911
Daniel Susser, Daniel S. Schiff, Sara Gerke, Laura Y. Cabrera, I. Glenn Cohen, Megan Doerr, Jordan Harrod, Kristin Kostick-Quenet, Jasmine McNealy, Michelle N. Meyer, W. Nicholson Price II, Jennifer K. Wagner
{"title":"Synthetic Health Data: Real Ethical Promise and Peril","authors":"Daniel Susser,&nbsp;Daniel S. Schiff,&nbsp;Sara Gerke,&nbsp;Laura Y. Cabrera,&nbsp;I. Glenn Cohen,&nbsp;Megan Doerr,&nbsp;Jordan Harrod,&nbsp;Kristin Kostick-Quenet,&nbsp;Jasmine McNealy,&nbsp;Michelle N. Meyer,&nbsp;W. Nicholson Price II,&nbsp;Jennifer K. Wagner","doi":"10.1002/hast.4911","DOIUrl":"10.1002/hast.4911","url":null,"abstract":"<div>\u0000 \u0000 <p>Researchers and practitioners are increasingly using machine-generated synthetic data as a tool for advancing health science and practice, by expanding access to health data while—potentially—mitigating privacy and related ethical concerns around data sharing. While using synthetic data in this way holds promise, we argue that it also raises significant ethical, legal, and policy concerns, including persistent privacy and security problems, accuracy and reliability issues, worries about fairness and bias, and new regulatory challenges. The virtue of synthetic data is often understood to be its detachment from the data subjects whose measurement data is used to generate it. However, we argue that addressing the ethical issues synthetic data raises might require bringing data subjects back into the picture, finding ways that researchers and data subjects can be more meaningfully engaged in the construction and evaluation of datasets and in the creation of institutional safeguards that promote responsible use.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"8-13"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4911","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142565139","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Contributors 贡献者
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-11-02 DOI: 10.1002/hast.4921
{"title":"Contributors","authors":"","doi":"10.1002/hast.4921","DOIUrl":"https://doi.org/10.1002/hast.4921","url":null,"abstract":"","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 5","pages":"39-40"},"PeriodicalIF":2.3,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142574109","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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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