ACD HeLa Genome Data Access Working Group
Background and Charge
HeLa is a human epithelial adenocarcinoma cell line that was derived from biopsy specimens of a 31-year old patient named Henrietta Lacks who was being treated for cervical cancer at The Johns Hopkins University Hospital in 1951. The specimens were obtained without her knowledge or consent. HeLa cells were the first human cells to be stably cultured for research and are the world's most commonly used human cells.
In spring 2013, a research team in Germany posted the full genome sequence of a HeLa cell line in a public database. The posting of the data triggered strong reactions from many, but most importantly from the Lacks family. The data were removed from public view. At the same time, a second HeLa genome sequence paper was under consideration for publication. In response, the NIH worked with the Lacks family to establish a process to make HeLa cell whole genome sequencing data available for biomedical research. NIH-funded researchers who sequence HeLa cell lines will be expected to deposit their data into NIH's database of Genotypes and Phenotypes (dbGaP) and requests for access to the data will be subject to a special review and approval process involving the HeLa Genome Data Access Working Group of the Advisory Committee to the Director.
- HeLa Genome Data Use Agreement
- HeLa Genome Sequencing Studies in dbGaP
- Hudson, K.L. and Collins, F.S. Family matters. Nature 500, 141–142 (2013)
- Adey, A. et al. The haplotype-resolved genome and epigenome of the aneuploid HeLa cancer cell line. Nature 500, 207–211 (2013)
- Landry, J.J. et al. The genomic and transcriptomic landscape of a HeLa cell line. G3 3, 1213–1224 (2013)