过分强调个人同意会忽视部落参与者的风险。
Overvaluing individual consent ignores risks to tribal participants.
机构信息
Vanderbilt University, Nashville, TN, USA.
Department of Environmental Health and Engineering, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, MD, USA.
出版信息
Nat Rev Genet. 2019 Sep;20(9):497-498. doi: 10.1038/s41576-019-0161-z. Epub 2019 Jul 15.
Abstract
Genomic studies often rely on individual-based consent approaches for tribal members residing outside of their communities. This consent model fails to acknowledge the risks to small groups such as tribes, which can implicate the community as a whole.
摘要
基因组研究通常依赖于居住在社区之外的部落成员的个体同意方法。这种同意模式没有认识到对小群体（如部落）的风险，这可能会牵连整个社区。
相似文献
1
Overvaluing individual consent ignores risks to tribal participants.过分强调个人同意会忽视部落参与者的风险。
Nat Rev Genet. 2019 Sep;20(9):497-498. doi: 10.1038/s41576-019-0161-z. Epub 2019 Jul 15.
2
Valid consent for genomic epidemiology in developing countries.发展中国家基因组流行病学的有效同意。
PLoS Med. 2007 Apr;4(4):e95. doi: 10.1371/journal.pmed.0040095.
3
Personal genomes: when consent gets in the way.个人基因组：当同意成为阻碍时。
Nature. 2008 Nov 6;456(7218):32-3. doi: 10.1038/456032a.
4
Consent for genomic epidemiology in developing countries: added human subject protection also needed.发展中国家基因组流行病学研究的知情同意：还需加强对人类受试者的保护
PLoS Med. 2007 Jun;4(6):e214. doi: 10.1371/journal.pmed.0040214.
5
Consent and population genomics: the creation of generic tools.同意与群体基因组学：通用工具的创建
IRB. 2009 Mar-Apr;31(2):15-20.
6
Informed consent and assent in human subject research.人体研究中的知情同意与同意参与
J Public Health Manag Pract. 2000 Nov;6(6):9-18. doi: 10.1097/00124784-200006060-00004.
7
Informed consent in implantable BCI research: identification of research risks and recommendations for development of best practices.植入式脑机接口研究中的知情同意：研究风险识别与最佳实践发展建议
J Neural Eng. 2016 Aug;13(4):043001. doi: 10.1088/1741-2560/13/4/043001. Epub 2016 Jun 1.
8
Informed Consent for Electroconvulsive Therapy--Finding Balance.电休克治疗的知情同意——寻求平衡
J ECT. 2015 Sep;31(3):143-6. doi: 10.1097/YCT.0000000000000241.
9
Informed consent and transesophageal echocardiography: a review of patient responses.知情同意和经食管超声心动图：对患者反应的回顾。
Int J Cardiol. 2010 Sep 3;143(3):227-9. doi: 10.1016/j.ijcard.2010.02.046. Epub 2010 Mar 4.
10
Growing use of genomic data reveals need to improve consent and privacy standards.基因组数据使用的不断增加揭示了改进同意书和隐私标准的必要性。
JAMA. 2013 May 22;309(20):2083-4. doi: 10.1001/jama.2013.5048.
引用本文的文献
1
Informed consent in genetic and genomic studies in Sub-Saharan Africa: a systematic review of bioethical issues.撒哈拉以南非洲地区基因与基因组研究中的知情同意：生物伦理问题的系统综述
BMC Med Ethics. 2025 Jul 19;26(1):99. doi: 10.1186/s12910-025-01170-z.
2
Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights From Excluded Communities, Structured Interviews, and Population Genetics.评估遗传性癌症风险中的公平性与包容性：来自被排除群体、结构化访谈和群体遗传学的见解
Cancer Control. 2025 Jan-Dec;32:10732748251355825. doi: 10.1177/10732748251355825. Epub 2025 Jun 30.
3
Ethical Oversight and Social Licensing of Portable MRI Research.便携式磁共振成像研究的伦理监督与社会许可
J Law Med Ethics. 2024;52(4):851-867. doi: 10.1017/jme.2024.166. Epub 2025 Jan 31.
4
Characterizing substructure via mixture modeling in large-scale genetic summary statistics.通过混合模型在大规模遗传汇总统计中表征子结构。
Am J Hum Genet. 2025 Feb 6;112(2):235-253. doi: 10.1016/j.ajhg.2024.12.007. Epub 2025 Jan 16.
5
A Just Genomics Needs an ELSI of Translation.公正的基因组学需要转化的伦理、法律和社会影响研究。
Hastings Cent Rep. 2024 Dec;54 Suppl 2:S126-S135. doi: 10.1002/hast.4938.
6
A contextual integrity approach to genomic information: what bioethics can learn from big data ethics.一种针对基因组信息的情境完整性方法：生物伦理学可从大数据伦理学中学到什么。
Med Health Care Philos. 2024 Sep;27(3):367-379. doi: 10.1007/s11019-024-10211-0. Epub 2024 Jun 12.
7
Characterizing substructure via mixture modeling in large-scale genetic summary statistics.通过大规模遗传汇总统计中的混合建模来表征子结构
bioRxiv. 2024 May 13:2024.01.29.577805. doi: 10.1101/2024.01.29.577805.
8
The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.基因组数据多样化的伦理挑战：一项定性证据综合分析。
Camb Prism Precis Med. 2023 Sep 12;2:e1. doi: 10.1017/pcm.2023.20. eCollection 2024.
9
Hunter-gatherer genetics research: Importance and avenues.狩猎采集者遗传学研究：重要性与途径
Evol Hum Sci. 2024 Feb 15;6:e15. doi: 10.1017/ehs.2024.7. eCollection 2024.
10
Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis.在与原住民数据主权不一致的研究政策中探索大学的开放性：案例分析。
Ethics Hum Res. 2024 Mar-Apr;46(2):2-15. doi: 10.1002/eahr.500202.
本文引用的文献
1
A framework for enhancing ethical genomic research with Indigenous communities.促进与原住民社区合作的基因组学研究的伦理框架。
Nat Commun. 2018 Jul 27;9(1):2957. doi: 10.1038/s41467-018-05188-3.
2
From "Personalized" to "Precision" Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.从“个性化”到“精准”医学：基因组医学中修辞改革的伦理和社会影响。
Hastings Cent Rep. 2016 Sep;46(5):21-33. doi: 10.1002/hast.614.
Zotero 插件