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Growing use of genomic data reveals need to improve consent and privacy standards

机译:基因组数据的使用越来越多,表明需要提高同意和隐私标准

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In March, the publication of the complete genome sequence of cancer cells from a Maryland woman who died in 1951 ignited an ethical firestorm. These cells, called HeLa because they were derived from the cervical tumor of Henrietta Lacks, have been widely cultured in laboratories and used in research. As documented in a 2010 book, the cells had been taken for research use without consent, and for years the woman's family had been largely unaware of their use (Skloot R. The Immortal Life of Henrietta Lacks. New York, NY: Crown; 2010). The publication of the sequence (Landry JJ et al. G3 [Bethesda]. doi:10.1534/g3.113 .005777 [published online March 11, 2013]), again without the consent of Lacks' family, renewed debate about the privacy and security of genomic information in research, as Rebecca Skloot noted in the New York Times (http: //tinyurl.com/c8wgp3f). By late March, the authors removed the sequence from an online database at the request of the family.
机译:今年3月,一名1951年去世的马里兰妇女的癌细胞的完整基因组序列的出版引发了一场道德大火。这些细胞之所以称为HeLa,是因为它们源自Henrietta Lacks的宫颈肿瘤,已经在实验室中广泛培养并用于研究。根据2010年一本书中的记录,这些细胞未经允许就被用于研究用途,多年来,该妇女的家人一直不知道它们的使用(Skloot R. Henrietta Lacks的不朽生命。纽约,纽约:皇冠; 2010年)。再次未经Lacks家人同意,该序列的发布(Landry JJ等人,G3 [Bethesda。doi:10.1534 / g3.113 .005777 [在线发布,2013年3月11日])再次引发了关于隐私权和正如Rebecca Skloot在《纽约时报》(http://tinyurl.com/c8wgp3f)中所指出的那样,该技术在研究中具有基因组信息的安全性。 3月下旬,作者应家庭的要求从在线数据库中删除了该序列。

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