{"title":"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","authors":"Stephanie A. Kraft, Kathleen F. Mittendorf","doi":"10.1002/hast.4932","DOIUrl":null,"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":2.3000,"publicationDate":"2024-12-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4932","citationCount":"0","resultStr":"{\"title\":\"Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape\",\"authors\":\"Stephanie A. Kraft, Kathleen F. Mittendorf\",\"doi\":\"10.1002/hast.4932\",\"DOIUrl\":null,\"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\":2.3000,\"publicationDate\":\"2024-12-21\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://onlinelibrary.wiley.com/doi/epdf/10.1002/hast.4932\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Hastings Center Report\",\"FirstCategoryId\":\"98\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/hast.4932\",\"RegionNum\":3,\"RegionCategory\":\"哲学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"ETHICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Hastings Center Report","FirstCategoryId":"98","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/hast.4932","RegionNum":3,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"ETHICS","Score":null,"Total":0}
Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape
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.
期刊介绍:
The Hastings Center Report explores ethical, legal, and social issues in medicine, health care, public health, and the life sciences. Six issues per year offer articles, essays, case studies of bioethical problems, columns on law and policy, caregivers’ stories, peer-reviewed scholarly articles, and book reviews. Authors come from an assortment of professions and academic disciplines and express a range of perspectives and political opinions. The Report’s readership includes physicians, nurses, scholars, administrators, social workers, health lawyers, and others.