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Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits 敏感性状基因组学研究的正义与社区赋权
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4930
Heini M. Natri, Carolyn Riley Chapman
{"title":"Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits","authors":"Heini M. Natri,&nbsp;Carolyn Riley Chapman","doi":"10.1002/hast.4930","DOIUrl":"https://doi.org/10.1002/hast.4930","url":null,"abstract":"<p>Community engagement and participatory research have been appropriately employed to increase the relevance, rigor, and acceptability of all types of research, but these approaches may be particularly important in genomics and biomedical research on sensitive traits such as neurodevelopmental, psychiatric, and behavioral ones. Here, we provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. Informed by this knowledge as well as one of the author's experiences, we set out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators, not solely as objects of study.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S56-S65"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4930","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869044","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
About the Special Report 关于特别报告
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4923
{"title":"About the Special Report","authors":"","doi":"10.1002/hast.4923","DOIUrl":"https://doi.org/10.1002/hast.4923","url":null,"abstract":"","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"inside_front_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.4923","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869046","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
Confronting the “Weaponization” of Genetics by Racists Online and Elsewhere 面对种族主义者在网上和其他地方的基因“武器化”
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4925
Aaron Panofsky, Kushan Dasgupta, Nicole Iturriaga, Bernard Koch
{"title":"Confronting the “Weaponization” of Genetics by Racists Online and Elsewhere","authors":"Aaron Panofsky,&nbsp;Kushan Dasgupta,&nbsp;Nicole Iturriaga,&nbsp;Bernard Koch","doi":"10.1002/hast.4925","DOIUrl":"https://doi.org/10.1002/hast.4925","url":null,"abstract":"<div>\u0000 \u0000 <p>Genomics research is regularly appropriated in social and political contexts to publicly legitimize unjust and malicious political views, policies, and actions. In recent years, there have been high-profile cases of mass shooters, public intellectuals, and political insiders using genomics findings to convince audiences that deadly force and coercive policies against racial minorities are warranted. To create a just genomics, geneticists must consider what makes their research so attractive and adaptable for the legitimization of unjust ends and what they can do to counter such appropriations. We offer insights and recommendations drawing from our research into the many ways online white nationalist and far-right political movements mobilize genetics research to promote their racist, sexist, antisemitic, and homophobic views. First, geneticists should identify and change routine research practices that feed eugenic thinking. Second, geneticists should adopt creative extra-scholarly communication efforts to counter the use of their field's research that occurs in nonscholarly spaces. Third, we identify permissive epistemological and professional practices within the genetics field that have enabled such unjust appropriations to thrive, and we recommend strategies for institutional reform.</p>\u0000 </div>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S14-S21"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4925","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869049","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
Enhancing Equity in Genomics: Incorporating Measures of Structural Racism, Discrimination, and Social Determinants of Health 增强基因组学的公平性：结合结构性种族主义、歧视和健康的社会决定因素的措施
IF 2.3 3区 哲学
Hastings Center Report Pub Date : 2024-12-21 DOI: 10.1002/hast.4927
Ramya M. Rajagopalan, Matteo D'Antonio, Joan H. Fujimura
{"title":"Enhancing Equity in Genomics: Incorporating Measures of Structural Racism, Discrimination, and Social Determinants of Health","authors":"Ramya M. Rajagopalan,&nbsp;Matteo D'Antonio,&nbsp;Joan H. Fujimura","doi":"10.1002/hast.4927","DOIUrl":"https://doi.org/10.1002/hast.4927","url":null,"abstract":"<p>The everyday harms of structural racism and discrimination, perpetuated through institutions, laws, policies, and practices, constitute social determinants of health, but measures that account for their debilitating effects are largely missing in genetic studies of complex diseases. Drawing on insights from the social sciences and public health, we propose critical methodologies for incorporating tools that measure structural racism and discrimination within genetic analyses. We illustrate how including these measures may strengthen the accuracy and utility of findings for diverse communities, clarify elusive relationships between genetics and environment in a racialized society, and support greater equity within genomics and precision health research. This approach may also support efforts to build and sustain vital partnerships with communities and with other fields of research inquiry, centering community expertise and lived experiences and drawing on valuable knowledge from practitioners in the social sciences and public health to innovate biomedical and genomic study designs aimed at community health priorities.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S31-S40"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4927","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868987","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 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,&nbsp;Charmaine D. Royal,&nbsp;Carmen de Kock,&nbsp;Gordon Awandare,&nbsp;Victoria Nembaware,&nbsp;Seraphin Nguefack,&nbsp;Marsha Treadwell,&nbsp;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
{"title":"Genomics and Biodiversity: Applications and Ethical Considerations for Climate-Just Conservation","authors":"Skye A. Miner,&nbsp;Timothy J. Thurman","doi":"10.1002/hast.4936","DOIUrl":"https://doi.org/10.1002/hast.4936","url":null,"abstract":"<p>Genomics holds significant potential for conservationists, offering tools to monitor species risks, enhance conservation strategies, envision biodiverse futures, and advance climate justice. However, integrating genomics into conservation requires careful consideration of its impacts on biodiversity, the diversity of scientific researchers, and governance strategies for data usage. These factors must be balanced with the varied interests of affected communities and environmental concerns. We argue that conservationists should engage with diverse communities, particularly those historically marginalized and most vulnerable to climate change. This inclusive approach can ensure that genomic technologies are applied ethically and effectively, aligning conservation efforts with broader social and environmental justice goals. Engaging diverse stakeholders will help guide responsible genomic integration, fostering equitable and sustainable conservation outcomes.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S114-S119"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4936","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869045","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
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
{"title":"Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape","authors":"Stephanie A. Kraft,&nbsp;Kathleen F. Mittendorf","doi":"10.1002/hast.4932","DOIUrl":"https://doi.org/10.1002/hast.4932","url":null,"abstract":"<p>Scientific data-sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community-informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S73-S83"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4932","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868990","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
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
{"title":"Nothing about Us without Us in Precision Medicine: A Call to Reframe Disability Difference in Genetics and Genomics","authors":"Kevin T. Mintz,&nbsp;Joseph A. Stramondo,&nbsp;Holly K. Tabor","doi":"10.1002/hast.4928","DOIUrl":"https://doi.org/10.1002/hast.4928","url":null,"abstract":"<p>Sixty-one million Americans and approximately a billion people worldwide live with some form of disability that limits one or more major life activities. The field of precision medicine continues to grapple with how to best serve disability communities. In this paper, we suggest that precision medicine faces an ethical tension between its goal to treat or cure disabling conditions and views that consider disability as a marginalized identity. We appeal to the concepts of recognition justice and distributive justice to argue that the ELSI community should take a more proactive role in promoting disability inclusion in precision medicine's practice and research. We also highlight two priorities for the ELSI community moving forward: facilitating greater collaboration between genetics and genomic professionals and disability communities and advocating for inclusive research design and disability accommodations in the research process.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S41-S48"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4928","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868988","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
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
{"title":"From Eugenics to Human Genome Editing: Bionationalism and Instrumentalizing Life in China within a Global Context","authors":"Jing-Bao Nie","doi":"10.1002/hast.4935","DOIUrl":"https://doi.org/10.1002/hast.4935","url":null,"abstract":"<p>As shocking as He Jiankui's genetic experiment resulting in the world's first gene-edited babies may have been, a socioethical inquiry into this paradigmatic case of scientific misconduct reveals its deep roots in genetic and scientific nationalism, as manifested in the widely accepted practice of <i>yousheng</i> (superior birth or eugenics) in China and the country's authoritarian pursuit of science superpower status. Along with eugenics, bionationalism has long been an international phenomenon. A <i>global sociobioethics</i> or <i>ethical transculturalism</i> is thus necessary to adequately investigate the macrolevel sociopolitical, historical, and transnational forces, such as bionationalism, that structurally shape bioethical issues and people's responses to them, causing the systematic undermining of essential bioethical norms and the instrumentalization of human life.</p>","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"S102-S113"},"PeriodicalIF":2.3,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4935","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142868993","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
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
{"title":"About The Hastings Center, the Center for ELSI Resources and Analytics, and the Cover Art","authors":"","doi":"10.1002/hast.4940","DOIUrl":"https://doi.org/10.1002/hast.4940","url":null,"abstract":"","PeriodicalId":55073,"journal":{"name":"Hastings Center Report","volume":"54 S2","pages":"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.4940","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142869043","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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