Hastings Center Report最新文献_第3页

Expanding the Agenda for a More Just Genomics 扩大议程，实现更公正的基因组学

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4924

Deanne Dunbar Dolan, Danielle M. Pacia, Josephine Johnston, Sandra Soo-Jin Lee, Mildred K. Cho

{"title":"Expanding the Agenda for a More Just Genomics","authors":"Deanne Dunbar Dolan, Danielle M. Pacia, Josephine Johnston, Sandra Soo-Jin Lee, Mildred K. Cho","doi":"10.1002/hast.4924","DOIUrl":"https://doi.org/10.1002/hast.4924","url":null,"abstract":"The integration of genomics into public health and medicine is happening at a faster rate than the accrual of the capabilities necessary to ensure the equitable, global distribution of its clinical benefits. Uneven access to genetic testing and follow-up care, unequal distribution of the resources required to access and participate in research, and underrepresentation of some descent groups in genetic and clinical datasets (and thus uncertain genetic results for some patients) are just some of the reasons to center justice in genomics. A more just genomics is an imperative rooted in the ethical obligations incurred by a publicly funded science that is reliant on human data. These features of genomics indebt the genomics enterprise and compel the expanded scope of responsibility proposed by the authors of this special report. The report begins to define justice in genomics for different stakeholder groups and proposes substantial shifts in power, resource distribution, scientific practice, and governance that could enable genomics to meet its obligations to humanity.","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S2-S13"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4924","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869048","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

Rectifying or Reinforcing? The (In)Equity Implications of Recontacting Practices in Genomic Medicine 矫正还是强化？基因组医学中重新接触实践的（In）公平含义

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4926

Michael P. Mackley, Hanna Faghfoury, Lauren Chad

{"title":"Rectifying or Reinforcing? The (In)Equity Implications of Recontacting Practices in Genomic Medicine","authors":"Michael P. Mackley, Hanna Faghfoury, Lauren Chad","doi":"10.1002/hast.4926","DOIUrl":"https://doi.org/10.1002/hast.4926","url":null,"abstract":"The practice of recontact in genomic medicine has the power to help rectify long-standing inequities in genetic testing. However, if not delivered systematically, recontacting practices also have the potential to reinforce these same inequities. Recontact, which occurs when contact between a clinician and patient is reinitiated after a relationship has ended, is often in search of or in response to updated interpretation or results. Currently, recontact is happening in a patient-driven and ad hoc manner, undermining its potential to benefit all patients. In this paper, the authors position justice as an additional argument in favor of systematic recontact and an argument against the predominantly patient-initiated model. They argue that patients from equity-deserving groups should be early beneficiaries of an emerging responsibility to recontact patients. The authors share illustrative clinical vignettes and propose role-specific and systems-level solutions to rightfully position recontact as a tool to promote a more equitable clinical genomics future.","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S22-S30"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4926","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869050","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

Accountability for Reasonableness as a Framework for the Promotion of Fair and Equitable Research 以合理问责制作为促进公平与公平研究的框架

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4931

Charles Dupras, Marie-Pierre Dubé, Simon Gravel, Hazar Haidar

{"title":"Accountability for Reasonableness as a Framework for the Promotion of Fair and Equitable Research","authors":"Charles Dupras, Marie-Pierre Dubé, Simon Gravel, Hazar Haidar","doi":"10.1002/hast.4931","DOIUrl":"https://doi.org/10.1002/hast.4931","url":null,"abstract":"<div>\u0000 \u0000 Despite increased efforts to ensure diversity in genomic research, the exclusion of minority groups from data analyses and publications remains a critical issue. This paper addresses the ethical implications of these exclusions and proposes accountability for reasonableness (A4R) as a framework to promote fairness and equity in research. Originally conceived by Norman Daniels and James Sabin to guide resource allocation in the context of health policy, A4R emphasizes publicity, relevance of reasons, enforcement, and revision as essential for legitimacy and trust in the decision-making process. The authors argue that A4R is also relevant to resource allocation in research and that, if adequately informed and incentivized by funding agencies, institutional review boards, and scientific journals, researchers are well-positioned to assess data-selection justifications. The A4R framework provides a promising foundation for fostering accountability in genomics and other fields, including artificial intelligence, where lack of diversity and pervasive biases threaten equitable benefit sharing.\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S66-S72"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4931","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868989","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

Where the Genetic Code Meets the Zip Code: Advancing Equity in Rare Disease Genomics 遗传密码与邮政编码相遇的地方：推进罕见病基因组学的公平性

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4929

Monica H. Wojcik, Hadley S. Smith, Yarden S. Fraiman

{"title":"Where the Genetic Code Meets the Zip Code: Advancing Equity in Rare Disease Genomics","authors":"Monica H. Wojcik, Hadley S. Smith, Yarden S. Fraiman","doi":"10.1002/hast.4929","DOIUrl":"https://doi.org/10.1002/hast.4929","url":null,"abstract":"The promise of genomic medicine lies in the opportunity to improve health outcomes via a personalized approach to management, grounded in genetic and genomic variation unique to an individual. However, disparities and inequities mar this remarkable landscape of genomic innovation. Prior efforts to understand these inequities have focused on populations for which genetic testing is relatively protocolized or where test utility varies greatly by ancestry groups, where equitable outcomes are more clearly defined. We therefore consider the current landscape of rare disease genomics, in which diagnostic approaches vary widely and utility remains to be fully understood, and suggest a path forward: how ecosocial theory may be used to guide novel equity-focused initiatives that incorporate illness narratives to improve population health. We present examples of narrative medicine in rare disease and reimagine the role this discipline may play in genomic sequencing studies, toward incorporation of the unique illness narrative into clinical genetics and genomics practice. Approaches that broaden the definitions of disease and of outcomes of interest will force the field to grapple with its racist history and begin to advance health equity and promote justice so that genomic medicine may truly deliver on its promise.","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S49-S55"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4929","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868994","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

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

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

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, Stephanie Russo Carroll","doi":"10.1002/hast.4937","DOIUrl":"https://doi.org/10.1002/hast.4937","url":null,"abstract":"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 Belmont principles, thereby better protecting Indigenous Peoples’ rights and interests in genomic data.","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, Michael A. Flatt, John M. Conley, Arlene Davis, Gail Henderson, Douglas MacKay, Rami Major, Rebecca L. Walker, R. Jean Cadigan","doi":"10.1002/hast.4913","DOIUrl":"10.1002/hast.4913","url":null,"abstract":"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.","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

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 In the September-October 2024 issue of the Hastings Center Report, 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.\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