Hastings Center Report最新文献_第9页

Genomics and Health Data Governance in Africa: Democratize the Use of Big Data and Popularize Public Engagement 非洲基因组学和健康数据治理：大数据使用民主化和普及公众参与

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4933

Nchangwi Syntia Munung, Charmaine D. Royal, Carmen de Kock, Gordon Awandare, Victoria Nembaware, Seraphin Nguefack, Marsha Treadwell, Ambroise Wonkam

{"title":"Genomics and Health Data Governance in Africa: Democratize the Use of Big Data and Popularize Public Engagement","authors":"Nchangwi Syntia Munung, Charmaine D. Royal, Carmen de Kock, Gordon Awandare, Victoria Nembaware, Seraphin Nguefack, Marsha Treadwell, Ambroise Wonkam","doi":"10.1002/hast.4933","DOIUrl":"https://doi.org/10.1002/hast.4933","url":null,"abstract":"<div>\u0000 \u0000 <p>Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as <i>ubuntu</i> and <i>ujamaa</i> and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data governance in Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data-driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision-making, and reciprocity. We make several recommendations for a social contract for genomics and data science in health, including the coproduction of genomics knowledge with study communities, power sharing between stakeholders, public education on the ethical and social implications of genetics and data science, benefit sharing, giving voice to data subjects through dynamic consent, and democratizing data access to allow wide access by all research stakeholders. Achieving this would require adopting participatory approaches to genomics and data governance.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S84-S92"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4933","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868991","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

Genomics and Biodiversity: Applications and Ethical Considerations for Climate-Just Conservation 基因组学和生物多样性：气候公正保护的应用和伦理考虑

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4936

Skye A. Miner, Timothy J. Thurman

引用次数: 0

Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape 开放科学能促进健康公正吗？不断发展的数据共享环境中的基因组研究传播

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4932

Stephanie A. Kraft, Kathleen F. Mittendorf

引用次数: 0

Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics 精准医学中没有我们就没有我们：呼吁在遗传学和基因组学中重新定义残疾差异

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4928

Kevin T. Mintz, Joseph A. Stramondo, Holly K. Tabor

引用次数: 0

From Eugenics to Human Genome Editing: Bionationalism and Instrumentalizing Life in China within a Global Context 从优生学到人类基因组编辑：全球背景下中国的生物民族主义和生命工具化

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4935

Jing-Bao Nie

引用次数: 0

About The Hastings Center, the Center for ELSI Resources and Analytics, and the Cover Art 关于黑斯廷斯中心，ELSI资源和分析中心，以及封面艺术

IF 2.3 3区哲学

Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4940

引用次数: 0

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":"<p>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.</p>","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":"<p>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.</p>","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 <p>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 <i>accountability for reasonableness</i> (<i>A4R</i>) 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.</p>\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":"<p>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.</p>","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