NIH to open genomic data of HeLa cells to researchers - FierceBiotech Research

"Biomedical researchers will now be able to apply for access to the whole genome data of an important cell line known as HeLa. The National Institutes of Health (NIH) made the announcement in Nature Wednesday that the agency has come to an agreement with the family of the late Henrietta Lacks, an African-American woman whose enduring cells have contributed to the development of modern vaccines, cancer treatments and in vitro fertilization techniques, among other medical advances. Doctors took tumor cells from Lacks without her knowledge or consent when she was being treated for cervical cancer at Baltimore's Johns Hopkins Hospital at the time of her death in 1951. She was 31 years old. Lacks' cells are unique because even after her death, scientists were able to keep her cancer cells alive and replicating under laboratory conditions. Under the new controlled-access policy, biomedical researchers who agree to abide by terms in the HeLa Genome Data Use Agreement will be able to apply to NIH for access to the full genome sequence data from HeLa cells. The agreement also creates a special NIH 6-member working group--made up of representatives from the medical, scientific, and bioethics communities as well as two representatives of the Lacks family--that will review proposals for access to the HeLa full genome sequence data.  In addition, the agreement requires NIH-funded researchers who generate full genome sequence data from HeLa cells to deposit their data into a single database for future sharing through this process.  In the same issue of Nature, a team headed by Dr. Jay Shendure of the University of Washington, Seattle, published a whole-genome analysis of the CCL-2 strain of HeLa cells. The paper examines the genome of the HeLa cells and identifies an insertion of the human papillomavirus (HPV) near an oncogene that may explain the aggressiveness of Lacks' cancer."