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)
HeLa Data Access Request Approval Process
The ACD HeLa Genome Data Access Working Group meets every two months to review requests. To ensure your request is reviewed by the working group prior to the ACD meeting, all requests must be submitted one week before the working group's meeting. Upcoming dates for the working group meetings are below.
Requests for access should follow the "Special Instructions for Preparing a Research Use Statement for Requesting Access to HeLa Cell Genome Sequence Data in dbGaP" and submitted to the dbGaP Authorized Access Portal for evaluation and review.
HeLa Genome Data Access Working Group Meeting Dates:
All requests must be submitted one week before the meeting.
- February 1, 2024 — Submit request by January 25, 2024
- April 4, 2024 — Submit request by March 28, 2024
- June 6, 2024 — Submit request by May 30, 2024
- August 1, 2024 — Submit request by July 25, 2024
- October 3, 2024 — Submit request by September 26, 2024
- December 5, 2024 — Submit request by November 28, 2024