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The uneasy ethical and legal underpinnings of large-scale genomic biobanks.
Annual Review of Genomics and Human Genetics ( IF 7.7 ) Pub Date : 2007-06-07 , DOI: 10.1146/annurev.genom.7.080505.115721
Henry T Greely 1
Affiliation  

Abstract Large-scale genomic databases are becoming increasingly common. These databases, and the underlying biobanks, pose several substantial legal and ethical problems. Neither the usual methods for protecting subject confidentiality, nor even anonymity, are likely to protect subjects' identities in richly detailed databases. Indeed, in these settings, anonymity is itself ethically suspect. New methods of consent will need to be created to replace the blanket consent common to such endeavors, with a consent procedure that gives subjects some real control over what they might consider inappropriate use of their information and biological material. Through their use, these biobanks are also likely to yield information that will be of some clinical significance to the subjects, information that they should have access to. Failure to adjust to these new challenges is not only legally and ethically inappropriate, but puts at risk the political support on which biomedical research depends.

中文翻译:

大型基因组生物库的不道德和法律基础。

摘要大规模基因组数据库变得越来越普遍。这些数据库以及潜在的生物库构成了一些重大的法律和道德问题。保护主题机密性的常用方法甚至匿名都无法在详细的数据库中保护主题的身份。确实,在这些情况下,匿名本身在伦理上是可疑的。需要建立新的同意方法,以一种同意程序取代受试者为此类努力所共有的一揽子同意,该程序可以使受试者对他们认为不当使用其信息和生物材料的行为具有一定的实际控制权。通过使用,这些生物库还可能产生对受试者具有一定临床意义的信息,这些信息是他们应该获得的信息。
更新日期:2019-11-01
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