Suppr超能文献

[基因组队列研究中的伦理考量]

[Ethical considerations in genomic cohort study].

作者信息

Choi Eun Kyung, Kim Ock-Joo

机构信息

Department of History of Medicine and Medical Humanities, College of Medicine, Seoul National University, Korea.

出版信息

J Prev Med Public Health. 2007 Mar;40(2):122-9. doi: 10.3961/jpmph.2007.40.2.122.

Abstract

During the last decade, genomic cohort study has been developed in many countries by linking health data and genetic data in stored samples. Genomic cohort study is expected to find key genetic components that contribute to common diseases, thereby promising great advance in genome medicine. While many countries endeavor to build biobank systems, biobank-based genome research has raised important ethical concerns including genetic privacy, confidentiality, discrimination, and informed consent. Informed consent for biobank poses an important question: whether true informed consent is possible in population-based genomic cohort research where the nature of future studies is unforeseeable when consent is obtained. Due to the sensitive character of genetic information, protecting privacy and keeping confidentiality become important topics. To minimize ethical problems and achieve scientific goals to its maximum degree, each country strives to build population-based genomic cohort research project, by organizing public consultation, trying public and expert consensus in research, and providing safeguards to protect privacy and confidentiality.

摘要

在过去十年中,许多国家通过将健康数据与存储样本中的基因数据相联系,开展了基因组队列研究。基因组队列研究有望找到导致常见疾病的关键基因成分,从而为基因组医学带来巨大进展。尽管许多国家努力建立生物样本库系统,但基于生物样本库的基因组研究引发了包括基因隐私、保密、歧视和知情同意等重要伦理问题。生物样本库的知情同意提出了一个重要问题:在基于人群的基因组队列研究中,当获得同意时未来研究的性质不可预见,是否有可能获得真正的知情同意。由于基因信息的敏感性,保护隐私和保密成为重要议题。为了将伦理问题降至最低并最大程度地实现科学目标,每个国家都努力通过组织公众咨询、在研究中寻求公众和专家共识以及提供保护隐私和保密的保障措施,来开展基于人群的基因组队列研究项目。

相似文献

1
[Ethical considerations in genomic cohort study].
J Prev Med Public Health. 2007 Mar;40(2):122-9. doi: 10.3961/jpmph.2007.40.2.122.
2
H3Africa: An Africa exemplar? Exploring its framework on protecting human research participants.
Dev World Bioeth. 2018 Jun;18(2):156-164. doi: 10.1111/dewb.12150. Epub 2017 May 3.
3
Ethical concerns on sharing genomic data including patients' family members.
BMC Med Ethics. 2018 Jun 18;19(1):61. doi: 10.1186/s12910-018-0310-5.
4
Genomic data in the electronic medical record: perspectives from a biobank community advisory board.
J Empir Res Hum Res Ethics. 2014 Dec;9(5):16-24. doi: 10.1177/1556264614553922. Epub 2014 Oct 13.
5
Ethical and legal aspects of applied genomic technologies: practical solutions.
Curr Mol Med. 2005 Feb;5(1):23-8. doi: 10.2174/1566524053152816.
7
Ethical, legal, and social issues in the translation of genomics into health care.
J Nurs Scholarsh. 2013 Mar;45(1):15-24. doi: 10.1111/jnu.12000. Epub 2013 Jan 31.
8
Privacy issues in second stage genomics.
Jurimetrics. 1999 Fall;40:59-76.
10
GenoShare: Supporting Privacy-Informed Decisions for Sharing Individual-Level Genetic Data.
Stud Health Technol Inform. 2020 Jun 16;270:238-241. doi: 10.3233/SHTI200158.

文献AI研究员

20分钟写一篇综述,助力文献阅读效率提升50倍。

立即体验

用中文搜PubMed

大模型驱动的PubMed中文搜索引擎

马上搜索

文档翻译

学术文献翻译模型,支持多种主流文档格式。

立即体验