Henrietta Lacks in 1945WIKIMEDIA, IMAGE COURTESY OF THE LACKS FAMILYThrough negotiations with the surviving family members of Henrietta Lacks, the National Institutes of Health (NIH) has outlined a framework for sharing the genome sequence of HeLa cells, the progenitors of which were provided without consent more than 60 years ago. The cervical cancer cells were harvested from Lacks at Johns Hopkins University hospital, and became the first cells researchers were able to culture indefinitely. Those original samples would go on to give birth to cell lines that are still replicating in thousands of labs around the world and to shed light on the molecular and genetic mechanics of cancer and myriad other biological phenomena.
The unprecedented agreement—announced yesterday (August 7) in Nature via a commentary written by NIH Director Francis Collins and Kathy Hudson, the agency’s deputy director for science, outreach, and policy—spells out terms that make two sequenced genomes of HeLa cells available only to scientists who apply for access and promise to use the genome data solely for biomedical research purposes. The deal follows the publication and subsequent retraction of one HeLa genome sequence this past March, which ignited debate over the privacy rights of the family. The agreement covers that genome sequence, completed by researchers at the European Molecular Biology Laboratory (EMBL) in Heidelberg, Germany, as well as a second HeLa genome sequenced by NIH-funded researchers at the University of Washington in Seattle.
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