The National Institutes of Health has reached an understanding with the family of the late Henrietta Lacks to allow biomedical researchers controlled access to the whole genome data of cells derived from her tumor, commonly known as HeLa cells.
These cells already have been used extensively in scientific research and have helped make possible medical advances in the past 60 years, including the development of modern vaccines, cancer treatments and in vitro fertilization techniques. HeLa cells are the most widely used human cell lines in existence today.
"The Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool researchers will use to study the cause and effect of many diseases with the goal of developing treatments," said Francis S. Collins, NIH director, M.D., Ph.D.
The understanding reached with the Lacks family respects their wishes to enable scientific progress while ensuring public acknowledgement of the contribution made by the late Henrietta Lacks. In addition, the understanding gives the Lacks family a seat at the table in reviewing applications for controlled access to Henrietta Lacks' whole genome data.
The new controlled access policy for full genome sequence data from HeLa cells will give the Lacks family the ability to have a role in work being done with the HeLa genome sequences and track any resulting discoveries. Biomedical researchers who agree to abide by the terms set forth in the HeLa Genome Data Use Agreement can apply to NIH for access to the full genome sequence data from HeLa cells. Along with representatives from the medical, scientific, and bioethics communities, two representatives of the Lacks family will serve on NIH's newly formed, six-member working group that will review the proposals for access.
NIH-funded researchers who generate full genome sequence data from HeLa cells will be expected to deposit their data into a single database for future sharing through this process.