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A Just Genomics Needs an ELSI of Translation Just Genomics需要翻译的ELSI
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4938
Meghan C. Halley, Nate W. Olson, Euan A. Ashley, Aaron J. Goldenberg, Holly K. Tabor
{"title":"A Just Genomics Needs an ELSI of Translation","authors":"Meghan C. Halley,&nbsp;Nate W. Olson,&nbsp;Euan A. Ashley,&nbsp;Aaron J. Goldenberg,&nbsp;Holly K. Tabor","doi":"10.1002/hast.4938","DOIUrl":"https://doi.org/10.1002/hast.4938","url":null,"abstract":"<p>The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit ELSI of translation—normative and pragmatic scholarship that embraces the interconnectedness of research and clinical care and centers the obligations of researchers, institutions, and funders to mitigate inequities throughout the translational pipeline. We propose core principles to guide an ELSI of translation and to ensure that this work balances the value of the generalizable knowledge that genomics research generates and the value of the individuals and communities who make this research possible.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S126-S135"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4938","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868995","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
Editors and Authors 编辑与作者
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4939
{"title":"Editors and Authors","authors":"","doi":"10.1002/hast.4939","DOIUrl":"https://doi.org/10.1002/hast.4939","url":null,"abstract":"","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"inside_front_cover-inside_back_cover"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4939","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869042","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
The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research 联合国土著人民与基因组学权利宣言：公正研究的伦理互补
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4937
Ibrahim Garba, Stephanie Russo Carroll
{"title":"The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research","authors":"Ibrahim Garba,&nbsp;Stephanie Russo Carroll","doi":"10.1002/hast.4937","DOIUrl":"https://doi.org/10.1002/hast.4937","url":null,"abstract":"<p>Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations—including Indigenous Peoples—that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP-based framework can complement the individual-focused national standard for research oversight represented by the <i>Belmont</i> principles, thereby better protecting Indigenous Peoples’ rights and interests in genomic data.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S120-S125"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4937","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869047","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
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
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