Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small
Downsizing genomic medicine: Approaching the ethical complexity of whole-genome sequencing by starting small
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DOI：
10.1097/gim.0b013e31820f603f
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发表时间：
2011-03-01
影响因子：
8.8
通讯作者：
Sharp, Richard R.
中科院分区：
文献类型：
--
作者：
Sharp, Richard R.
当我们展望全基因组测序整合到患者护理中时，我们可以预见到许多需要解决的伦理挑战。其中最棘手的问题涉及知情同意和对大量遗传信息的负责任管理。考虑到可能的发现范围，目前尚不清楚在多大程度上可能获得有意义的患者同意进行基因组测试。同样不清楚的是，临床医生将如何传播由全基因组测序产生的大量遗传信息。为了制定管理这些伦理挑战的实用策略，我们提出了一项研究议程，将多种形式的临床基因检测作为自然实验室，以开发管理基因组医学伦理复杂性的最佳实践。中华医学杂志，2011,13(3):191-194。
As we look to a time when whole-genome sequencing is integrated into patient care, it is possible to anticipate a number of ethical challenges that will need to be addressed. The most intractable of these concern informed consent and the responsible management of very large amounts of genetic information. Given the range of possible findings, it remains unclear to what extent it will be possible to obtain meaningful patient consent to genomic testing. Equally unclear is how clinicians will disseminate the enormous volume of genetic information produced by whole-genome sequencing. Toward developing practical strategies for managing these ethical challenges, we propose a research agenda that approaches multiplexed forms of clinical genetic testing as natural laboratories in which to develop best practices for managing the ethical complexities of genomic medicine. Genet Med 2011: 13(3): 191-194.