has negotiated an agreement with the family of Henrietta Lacks, the African-American woman who died of cervical cancer in 1951 and from whom the famous cell line, HeLa, was derived. The agreement will provide researchers controlled access to the full HeLa genome, through a review group of physicians, scientists, a bioethicist, and Lacks family members, according to a report in Nature and other news media.The National Institutes of Health (NIH)
Earlier this year, controversy arose in March when German scientists published part of the HeLa cell genome in the journal, Genes/Genomics/Genetics and The New York Times published a critical article by Rebecca Skloot, author of the best-selling account of the case, The Immortal Life of Henrietta Lacks. The article stated that the Lacks family did not want what they considered private genetic information published without their consent.
More information about the HeLa Cell Genome Sequencing Studies can be found here.