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Medical News and Perspectives |

Growing Use of Genomic Data Reveals Need to Improve Consent and Privacy Standards

Bridget M. Kuehn
JAMA. 2013;309(20):2083-2084. doi:10.1001/jama.2013.5048.
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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.

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Genome sequencing studies may reveal information about the health of the participants and their families, stirring discussion about appropriate protections for such data.



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