Many students may be familiar with Henrietta Lacks, an African American woman whose story and legacy is written in Rebecca Skloot’s nonfiction book “The Immortal Life of Henrietta Lacks.” Lacks, a cervical cancer patient whose tumor cells turned out to possess a reproductive nature, were taken without consent and used in laboratories across the world.
For nearly 62 years, the Lack’s family had little input on the research conducted with Henrietta Lacks’ cells. But this summer, the family finally reached a settlement with the National Institutes of Health restricting NIH-financed research on the genome of these cells.
In 1951, Lacks was diagnosed with an aggressive form of cervical cancer and was treated at Johns Hopkins Hospital in Baltimore. During her treatment process, doctors extracted cells from her tumor and discovered that these cells thrived in a laboratory setting, a trait no human cells had exhibited prior to this.
The cells, dubbed “HeLa” cells, soon began to be used in laboratories around the world. Their ability to replicate at astonishing rates became a valuable asset to scientists wanting a stable base for experiments. Since the discovery, Lacks’ cells have been the subjects of more than 74,000 research studies on almost every disease. Among the many advances yielded from the use of HeLa cells include the development of the polio vaccine and profound insights into cell biology, in-vitro fertilization, and cancer.
Despite the fact that the use of HeLa cells became so widespread and influential, neither Lacks nor her family ever consented to the researchers’ using her cells. They have been left in the dark regarding studies performed with the cells, which created many privacy issues involving the genomic sequence of HeLa cells.
From the agreement with the NIH, however, the Lacks family will at last have a say in how the cells are used. Under the new terms, NIH-financed research on the genome of HeLa cells will be restricted, and two family members will be placed on a committee approving such research.
The deal marks an important milestone in the saga of Henrietta Lacks and the legacy she left behind. Though the settlement is only applicable to projects funded by NIH, it is the agency’s hope that other organizations will honor it.
Skloot, the author of “The Immortal Life of Henrietta Lacks,” knew that the agreement would be historical. “It was a big moment, a hopeful moment, sitting down with the family and bringing so many years of research without consent to an end,” she told NBC News.
