• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

相似文献

1
Biobank governance: heterogeneous modes of ordering and democratization.生物样本库治理:多样化的秩序模式与民主化
J Community Genet. 2012 Apr;3(2):61-72. doi: 10.1007/s12687-011-0070-0. Epub 2011 Dec 7.
2
Biobank governance: trends and perspectives.生物样本库治理:趋势与展望
Pathobiology. 2007;74(4):206-11. doi: 10.1159/000104446.
3
Transparency About Governance Contributes to Biobanks' Trustworthiness: Call for Action.透明度有助于生物库的信誉:行动呼吁。
Biopreserv Biobank. 2021 Feb;19(1):83-85. doi: 10.1089/bio.2020.0057. Epub 2020 Oct 30.
4
Biobank governance in the post-genomic age.后基因组时代的生物样本库治理
Per Med. 2010 Mar;7(2):187-195. doi: 10.2217/pme.10.4.
5
Managing "incidental findings" in biobank research: Recommendations of the Taiwan biobank.生物样本库研究中“意外发现”的管理:台湾生物样本库的建议
Comput Struct Biotechnol J. 2019 Aug 2;17:1135-1142. doi: 10.1016/j.csbj.2019.07.006. eCollection 2019.
6
Biobank networking and globalisation: perspectives and practices of Australian biobanks.生物银行网络与全球化:澳大利亚生物银行的视角与实践。
Aust Health Rev. 2021 Mar;45(2):214-222. doi: 10.1071/AH20063.
7
Future-proofing biobanks' governance.为生物银行的治理做好前瞻性规划。
Eur J Hum Genet. 2020 Aug;28(8):989-996. doi: 10.1038/s41431-020-0646-4. Epub 2020 May 18.
8
Practice evaluation of biobank ethics and governance: current needs and future perspectives.生物库伦理和治理的实践评估:当前需求和未来展望。
J Med Genet. 2019 Mar;56(3):176-185. doi: 10.1136/jmedgenet-2018-105617. Epub 2018 Nov 21.
9
Ethically sustainable governance in the biobanking of eggs and embryos for research.用于研究的卵子和胚胎生物样本库中的伦理可持续治理。
Monash Bioeth Rev. 2015 Dec;33(4):277-94. doi: 10.1007/s40592-015-0047-6.
10
Risk mapping for better governance in biobanking: the case of biobank.cy.生物样本库更好治理的风险映射:以biobank.cy为例
Front Genet. 2024 Jun 14;15:1397156. doi: 10.3389/fgene.2024.1397156. eCollection 2024.

引用本文的文献

1
Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples.值得信赖的合作伙伴、社区优先事项和数据保护:阿拉斯加原住民精准医学研究的要求。
J Community Genet. 2025 Mar 3. doi: 10.1007/s12687-025-00779-2.
2
The Government Should Play a Role Greater Than That of Construction Supervisor in the National Bio-Big Data Infrastructure.政府在国家生物大数据基础设施建设中应发挥比建设监管者更重要的作用。
J Korean Med Sci. 2024 Sep 23;39(36):e262. doi: 10.3346/jkms.2024.39.e262.
3
Establishing a Pregnancy Lyme Disease Biobank.建立妊娠莱姆病生物库。
Methods Mol Biol. 2024;2742:245-257. doi: 10.1007/978-1-0716-3561-2_17.
4
Thalassemia, biobanking infrastructures, and personalized stem cell therapies in Chennai.金奈的地中海贫血、生物样本库基础设施与个性化干细胞疗法
Front Sociol. 2023 Jul 27;8:1057220. doi: 10.3389/fsoc.2023.1057220. eCollection 2023.
5
Advancing clinical and translational research in germ cell tumours (GCT): recommendations from the Malignant Germ Cell International Consortium.推进生殖细胞肿瘤(GCT)的临床和转化研究:恶性生殖细胞瘤国际联合会的建议。
Br J Cancer. 2022 Nov;127(9):1577-1583. doi: 10.1038/s41416-022-02000-4. Epub 2022 Oct 13.
6
Better governance starts with better words: why responsible human tissue research demands a change of language.善政始于善言:为何负责任的人类组织研究需要改变语言。
BMC Med Ethics. 2022 Sep 1;23(1):90. doi: 10.1186/s12910-022-00823-7.
7
Current Status and Future Challenges of Biobank Research in Malaysia.马来西亚生物样本库研究的现状与未来挑战
Asian Bioeth Rev. 2021 Mar 31;13(3):297-315. doi: 10.1007/s41649-021-00171-5. eCollection 2021 Sep.
8
Stakeholder perspectives on the ethico-legal dimensions of biobanking in South Africa.南非生物库伦理法律维度的利益相关者观点。
BMC Med Ethics. 2021 Jul 1;22(1):84. doi: 10.1186/s12910-021-00645-z.
9
Genomic data and the dividual self.基因组数据与个体自我。
Genet Res (Camb). 2019 Dec 11;101:e12. doi: 10.1017/S0016672319000107.
10
Raising to the Challenge: Building a Federated Biobank to Accelerate Translational Research-The University Biobank Limburg.迎接挑战:建立联合生物样本库以加速转化研究——林堡大学的生物样本库
Front Med (Lausanne). 2019 Oct 22;6:224. doi: 10.3389/fmed.2019.00224. eCollection 2019.

本文引用的文献

1
Biobank governance in the post-genomic age.后基因组时代的生物样本库治理
Per Med. 2010 Mar;7(2):187-195. doi: 10.2217/pme.10.4.
2
Icelandic genomics firm goes bankrupt.冰岛基因组学公司破产。
Nature. 2009 Nov 26;462(7272):401. doi: 10.1038/462401a.
3
Donors perceptions of consent to and feedback from biobank research: time to acknowledge diversity?生物样本库研究中捐赠者对同意和反馈的看法:是时候承认多样性了吗?
Public Health Genomics. 2010;13(6):345-52. doi: 10.1159/000262329. Epub 2009 Nov 26.
4
Can you keep a (genetic) secret? The genetic privacy movement.你能保守(基因)秘密吗?基因隐私运动。
J Genet Couns. 2004 Aug;13(4):273-91. doi: 10.1023/b:jogc.0000035522.58496.c8.
5
Hippocrates revisited? Old ideals and new realities.重访希波克拉底?古老的理想与新的现实。
Genomic Med. 2008 Jan;2(1-2):1-3. doi: 10.1007/s11568-008-9020-2. Epub 2008 May 14.
6
Biobanks for genomics and genomics for biobanks.用于基因组学的生物样本库以及用于生物样本库的基因组学。
Comp Funct Genomics. 2003;4(6):628-34. doi: 10.1002/cfg.333.
7
From genetic privacy to open consent.从基因隐私到开放同意。
Nat Rev Genet. 2008 May;9(5):406-11. doi: 10.1038/nrg2360.
8
A proposal for a model of informed consent for the collection, storage and use of biological materials for research purposes.关于为研究目的收集、存储和使用生物材料的知情同意模型的提案。
Patient Educ Couns. 2008 Apr;71(1):136-42. doi: 10.1016/j.pec.2007.12.003. Epub 2008 Feb 19.
9
Trends in ethical and legal frameworks for the use of human biobanks.人类生物样本库使用的伦理和法律框架趋势。
Eur Respir J. 2007 Aug;30(2):373-82. doi: 10.1183/09031936.00165006.
10
Locating tissue collections in tissue economies--deriving value from biomedical research.在组织经济中定位组织样本库——从生物医学研究中获取价值。
New Genet Soc. 2006 Apr;25(1):33-49. doi: 10.1080/14636770600603469.

生物样本库治理:多样化的秩序模式与民主化

Biobank governance: heterogeneous modes of ordering and democratization.

作者信息

Gottweis Herbert, Lauss Georg

机构信息

Life Science Governance Research Platform/Department of Political Science, University of Vienna, Universitätsstr. 7 (NIG 2.Stock), 1010, Vienna, Austria,

出版信息

J Community Genet. 2012 Apr;3(2):61-72. doi: 10.1007/s12687-011-0070-0. Epub 2011 Dec 7.

DOI:10.1007/s12687-011-0070-0
PMID:22147279
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3312942/
Abstract

The great interest in biobanks, the related, substantial investments, and the expectations connected with them raises the question of how to explain the relative successes and failures of contemporary biobank projects. In this article we will present and discuss areas that need ongoing attention by many stakeholders in order stabilize and utilize biobanks and biobank networks in the future. Our aim is to present and utilize an analytical model for comparing structures of biobank governance. The governance model we deduce from empirical case studies is not a well-ordered, almost bureaucratic type of government. The patchwork character and the interrelatedness of heterogeneous activities that constitute biobank governance in its multiple dimensions will be highlighted. Biobank governance should therefore be understood as strategy for patterning a network of interaction that unfolds within and across a number of different fields including a variety of activities that go beyond regulatory activities: the scientific/technological field, the medical/health field, the industrial-economic field, the legal-ethical, and the sociopolitical field. Our account emphasizes that biobanks are not technical visions that operate vis-à-vis an external society. The article discusses attempts to develop participatory governance structures. It concludes that facilitating and managing the integration of a network of more or less interrelated actors, in many nonhierarchic ways, should not be equated with democratization per se, but can nevertheless be regarded as an important step towards a more pluralistic and inclusive style of policy making.

摘要

对生物样本库的浓厚兴趣、相关的大量投资以及与之相关的期望引发了一个问题,即如何解释当代生物样本库项目的相对成功与失败。在本文中,我们将介绍并讨论许多利益相关者需要持续关注的领域,以便在未来稳定并利用生物样本库和生物样本库网络。我们的目标是提出并运用一个分析模型来比较生物样本库治理结构。我们从实证案例研究中推导出来的治理模型并非一种有序的、近乎官僚式的治理类型。构成生物样本库治理多维度的拼凑特征和异质活动的相互关联性将得到突出强调。因此,生物样本库治理应被理解为一种构建互动网络的策略,这种互动网络在包括各种超越监管活动的多种不同领域内和跨领域展开:科学/技术领域、医学/健康领域、工业经济领域、法律伦理领域以及社会政治领域。我们的阐述强调生物样本库并非相对于外部社会运作的技术愿景。本文讨论了发展参与式治理结构的尝试。结论是,以多种非等级制方式促进和管理或多或少相互关联的行为者网络的整合,本身不应等同于民主化,但仍可被视为朝着更具多元化和包容性的决策风格迈出的重要一步。