Her parents named her Loretta Pleasant when she was born on August 1, 1920 in the mountains of Roanoke Virginia. As an adult she chose to change her name to Henrietta. Irony followed Henrietta throughout her life and when she was still young once her mother died she went to live with her grandfather. The irony was he lived in the old slave quarter of a large plantation home that had previously belonged to one of her white ancestors. At her Grandfather’s home she shared a room with one of the first cousins, Day Lacks and she and her cousin had a son together when she was only 14 years old. Four years later they had a baby girl. The cousins married in 1941 and she became Henrietta Lacks although to future scientists she would always be known as HeLa.
A poor, African American tobacco farmer all her life, known in her lifetime to only her family, church community and the few friends she had time for while working and raising a family, she became the source of vital information for developing the polio vaccine, in vitro fertilization, cloning and genetic mapping. Her cells, taken and reproduced without her permission, have been bought and sold since 1951 for billions of dollars despite the fact few know her name, even those who have benefited from the science based on this cell line.
In 1951, Lacks was suffering from stomach pain and bleeding. She’d been having these symptoms for some time but since they were too poor to pay for health care, especially with a family that now included four children, she put off seeing a doctor until the symptoms became severe. In January she went to Johns Hopkins in the hopes someone could just give her some medicine to help her tolerate the symptoms. She was diagnoses with cervical cancer and put on a radiation regimen in the hopes of slowing the fast progressing malignancy.
During her short treatment, unbeknownst to her or her husband, two cervical samples were taken from Lacks and preserved. Just over eight months from the day she was diagnosed, Henrietta Lacks died on October 4, 1951 at the young age of 31, never knowing what her cells would contribute to the future of medicine.
The next time Lack’s tumor cells were seen was in the lab of Dr. George Otto Gey, a researcher at Hopkins. Gey noticed an unusual quality to the cells. The majority of cells lived only a short time outside the body, yet Lack’s cells were surviving much longer. Gey began isolating and examining different cells until he located one that appeared to be able to survive for an exceptionally long period of time. From this cell he created an entire cell line which he continued to produce even though he wasn’t yet sure for what he would use it. He named the cell line HeLa in honor of Henrietta Lack.
While Gey may not have known how to use the cells to the betterment of science he never stopped trying to learn. Never getting anywhere noteworthy this was not to be the case for a young physical, named Jonas Salk. Before he had access to the HeLa cell line, Salk used monkey cells in his search for the polio vaccine. Once he began using HeLa cells in his research, the polio vaccine was soon to follow. This made the cell line well known and demand for the cells by other researchers grew so fast that scientists began to clone them in 1955.
The use of HeLa cells for research has proven of immense importance for our knowledge of diversity and how this related to various disease processes. It is now well known that diseases affect different genders and races at differing rates and disease processes may be different in these diverse groups. Yet for the sake of being able to limit confounds that might hinder interpretation of results, much research has been conducted only with a single gender or a single racial group. To date although we are more aware of the need for diverse medical knowledge, much research still focuses on Caucasians and men. This limits the degree to which findings can be generalized to other groups. The HeLa cell line comes from an African American woman who had Caucasian ancestors. This means that it may be possible to use the traits from each group in examining the findings of various research studies to determine how differential effects result based on race.
The continued use of HeLa cells has been a major ethical and legal debate since they were first harvested in 1951. Neither Lacks nor any member of her family once Lacks died gave permission for the use of the cells. Lacks family has been fighting for Lacks and others right to bodily integrity since her death.
In the case of Moore v. Regents in 1990, the California Supreme Court upheld the
medical community’s right to not just utilize but actually commercialize discarded tissue,
removed during any number of medical procedures. However, Henrietta Lacks cells were not taken as part of a normally occurring procedure then extra tissue not needed was intended to be destroyed. Her cells were taken with for the express purpose of research, did not need to be harvested for any reason related to her treatment and were taken secretly without her permission.
Since that case, the Lacks family has continued to fight for control of their ancestors cell line and in August of 2013, and agreement was reached between the Lacks family and the National Institutes of Health. The agreement stated that the Lacks family would be acknowledged an all scientific publications resulting from the research and they would have some control over who used the cells in the future.
