After reaching an agreement with the family of a woman whose cells have become incredibly important to science, the National Institutes of Health will begin granting controlled access to the cells’ genetic information.
Henrietta Lacks died in 1951 from cervical cancer, but lived on through the cells taken from her tumor without consent. Known as HeLa cells, they became the first human cells continuously replicated for research and today are the most widely used cells in existence.
The cells thrust the Lacks family into the public eye due to a scientific paper in 1971 (subscription required), a BBC documentary in 1997 and a bestselling book in 2010, all of which identified Lacks by name. The Lacks family and researchers began objecting to the scant credit given to Lacks for her contribution to science.
In March, German researchers published the HeLa genome and compared its DNA to healthy cells. There was quick backlash due to the potential making the data public revealed sensitive medical information about the Lacks family. The researchers pulled the information.
The new agreement between the Lacks family and NIH grants a newly-formed six-person group, which includes two members of the Lacks family, the ability to review applications for access to the HeLa cell genome. NIH-funded researchers will be expected to add the data they generate to a group database. Anyone who uses the HeLa cell genome will be required to include a note of gratitude to the Lacks family in their publications.
“The sequencing and posting of the HeLa genome brought into sharp relief important ethical and policy issues,” said NIH director Francis Collins said in a statement. “To understand the family’s perspectives, we met with them face to face three times over four months, and listened carefully to their concerns. Ultimately, we arrived at a path forward that respects their wishes and allows science to progress.”