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A community assessment of privacy preserving techniques for human genomes.人类基因组隐私保护技术的社区评估
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2
On genomics, kin, and privacy.关于基因组学、亲属关系与隐私
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3
Sequence variants in SLC16A11 are a common risk factor for type 2 diabetes in Mexico.SLC16A11 中的序列变异是墨西哥 2 型糖尿病的常见危险因素。
Nature. 2014 Feb 6;506(7486):97-101. doi: 10.1038/nature12828. Epub 2013 Dec 25.
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First FDA authorization for next-generation sequencer.美国食品药品监督管理局首次批准下一代测序仪。
N Engl J Med. 2013 Dec 19;369(25):2369-71. doi: 10.1056/NEJMp1314561. Epub 2013 Nov 19.
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Nine things to remember about human genome diversity.关于人类基因组多样性需牢记的九件事。
Tissue Antigens. 2013 Sep;82(3):155-64. doi: 10.1111/tan.12165.
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Deal done over HeLa cell line.关于海拉细胞系的交易已达成。
Nature. 2013 Aug 8;500(7461):132-3. doi: 10.1038/500132a.
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Geneticists push for global data-sharing.遗传学家推动全球数据共享。
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8
Ethical and legal implications of whole genome and whole exome sequencing in African populations.全基因组和全外显子组测序在非裔人群中的伦理和法律影响。
BMC Med Ethics. 2013 May 28;14:21. doi: 10.1186/1472-6939-14-21.
9
[Genomic medicine in public health policies: a perspective of Mexican biomedical researchers].[公共卫生政策中的基因组医学:墨西哥生物医学研究人员的视角]
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保密性与数据共享:墨西哥《基因组主权法案》的漏洞

Confidentiality and data sharing: vulnerabilities of the Mexican Genomics Sovereignty Act.

作者信息

Rojas-Martínez Augusto

机构信息

Facultad de Medicina and Centro de Investigación y Desarrollo en Ciencias de la Salud, Universidad Autónoma de Nuevo León, Carlos Canseco S.N. Colonia Mitras Centro, Monterrey, C.P. 64460, Mexico,

出版信息

J Community Genet. 2015 Jul;6(3):313-9. doi: 10.1007/s12687-015-0233-5. Epub 2015 May 20.

DOI:10.1007/s12687-015-0233-5
PMID:25990230
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4524836/
Abstract

A law known as "Genomic Sovereignty Act", instituted in 2011, regulates research on the human genome in Mexico. This law establishes Government regulations for the exportation of DNA samples from Mexican nationals for population genetics studies. The Genomic Sovereignty Act protects fundamental human values, as confidentiality and non-discrimination based on personal genetic information. It also supports the development of the genome-based medical biotechnology and the bio-economy. Current laws for the protection of the genomic confidentiality, however, are inexplicit and insufficient, and the legal and technological instruments are primitive and insufficient to safeguard this bioethical principle. In addition, this law may undermine efforts of the national and international scientific communities to cooperate with big-data analysis for the development of the genome-based biomedical sciences. The argument of this article is that deficiencies in the protection of the confidentiality of genomic information and limitations in data sharing severely weaken the objectives and scope of the Genomic Sovereignty Act. In addition, the Act may compromise the national biomedical development and the international cooperation for research and development in the field of human genomics.

摘要

2011年制定的一项名为《基因组主权法》的法律对墨西哥的人类基因组研究进行规范。该法律确立了政府对墨西哥国民DNA样本出口用于群体遗传学研究的规定。《基因组主权法》保护基本的人类价值观,如基于个人基因信息的保密性和非歧视性。它还支持基于基因组的医学生物技术和生物经济的发展。然而,目前保护基因组保密性的法律不明确且不充分,法律和技术手段原始且不足以维护这一生物伦理原则。此外,该法律可能会破坏国家和国际科学界为基于基因组的生物医学科学发展进行大数据分析合作的努力。本文的论点是,基因组信息保密性保护方面的缺陷以及数据共享的限制严重削弱了《基因组主权法》的目标和范围。此外,该法案可能会损害国家生物医学发展以及人类基因组学领域的国际研发合作。