HeLa cells have been with us for decades, noticed but ignored like a comfortable wallpaper design at home or the office. Yet few of us have tried to find out what the combination of letters stand for.
Along comes science writer Rebecca Skloot, who with curiosity, intelligence, energy, and determination to spare, does that and more. She not only unfolds the story behind HeLa — the code name for the cells cultured from a biopsy taken from the cancer of the cervix of Henrietta Lacks — but she also befriends one of the protagonist's daughters and even becomes entwined with the family herself.
Henrietta Lacks was born in 1920, the ninth of 10 siblings, and had a sixth or seventh grade education. Her family farmed the tobacco fields where previous generations had worked as slaves. She had poliomyelitis in childhood, and spent one year in a Drinker tank respirator. She had her first child at age 14 with her first cousin David (“Day”) Lacks, and went on to have four more children with him. (They had shared a bedroom from the time she was four.) She also had neurosyphilis.
In September 1950, Henrietta had delivered a baby boy, Joseph. No notes in the chart mentioned that there was any abnormality of the cervix. In January 1951, Henrietta began to have pelvic pain. A month later, she was told she had cervical cancer; her tumor was malignant. She signed a general consent form for “any operative procedures” that staff “may deem necessary.”
Henrietta's tumor was treated with radium and vanished transiently, but she became infertile and no one had warned her that this would happen. She later said she would not have given permission had she known she would never again give birth to a child. Ultimately, the tumor spread throughout the body. She became anemic and her kidneys failed. Morphine was given for pain, starting on Sept. 24, 1951, and other medications were discontinued. She died 11 days later at age 31.
Prior to being treated for the tumor, cells from the carcinoma were removed for research purposes without her consent; eight days later, Dr. George Otto Gey obtained another sample of her tumor for his lab.
The tumor biopsy became the central issue because she had never given fully informed consent. In an era of paternalistic medical practice, physicians decided unilaterally how much they would tell their patients.
Most attempts to establish cultures of human cells fail ultimately; Dr. Leonard Hayflick, a noted cell biologist, set the limit as 17 fibroblast doublings in culture, but Henrietta's cancer cells went on and on. No explanation for this immortality has come to light to explain the remarkable difference in her cells.
More than just a story about the source of an immortal cell line, The Immortal Life of Henrietta Lacks is a case study in modern medical ethics. At the same time, it sheds light on the dreadful damage racism has done in our country, focusing largely on one of out greatest medical centers, Johns Hopkins, where Henrietta went for treatment. But, at the time, it could have happened anywhere, even Columbia or another Ivy League institution.
It is now hard to imagine the force of racial segregation in the twentieth century, when even public drinking fountains were separate for “Negroes” or “colored” people, the terms of those days. But that was innocuous, compared to doing surgical procedures without informed consent.
The issue arose again in 1965 when Dr. Chester Southam used prison inmates to find out if HeLa cells were oncogenic — and indeed they were. Intradermal injections of HeLa cells led to the formation of local tumors, which propagated but fortunately did not metastasize to remote anatomic sites. Dr. Southam was accused of fraud and unprofessional behavior by the New York State Board of Regents.
The NIH then incorporated the principle of informed consent into grant applications. In 1966, Henry K. Beecher, MD, a Harvard professor of anesthesiology, wrote an influential editorial in The New England Journal of Medicine delineating the principles of informed consent.
According to Skloot, HeLa cells have “helped make drugs for treating herpes, leukemia, influenza, hemophilia and even Parkinson disease.” The cells were also used to determine the true number of chromosomes in human cells.
And when the poliomyelitis vaccine was being developed, HeLa cells were in much demand to grow the virus. At first the multiplying cells were tended in research laboratories, but ultimately there was enough business for two commercial companies.
The business enterprises prospered and had some unintended consequences. The family did not learn of this activity until 25 years had passed after Henrietta's death from widespread metastatic cancer. They also ultimately learned that scientific articles were being published about the cells.
Henrietta's daughter, Deborah Lacks-Pullum, expressed their anger: “If our mother's cells done so much for medicine, how come her family can't afford to see no doctors? Don't make no sense. People got rich off my mother without us even knowin about them taking her cells, now we don't get a dime.”
Skloot interviewed many members of the family, aided by Henrietta's daughter Deborah. One of them showed the author a tape of a 1997 BBC program about Henrietta called “The Way of All Flesh,” the 53-minute program is still available for viewing at: http://bit.ly/mHycVX.
Readers get to meet the colorful family members, supported by an insert of photographs. One of them had been convicted of murder. In the maternal line, Henrietta's grandfather was a white man, Albert Lacks. Her great-great-grandmother was a slave named Mourning who worked on a plantation. The family lived only 12 miles from the local lynch tree and where the local Klu Klux Klan held meetings on a local baseball field into the 1980s. Whites and blacks in the family did not mix.
HeLa cells led to another surprise discovery, announced at a national meeting by cell/molecular biologist and geneticist Stanley Gartler. Glucose-6-phosphate dehydrogenase is found almost exclusively, though rarely, in blacks. Using that biomarker, it became evident the presence of HeLa in cell cultures followed contamination by HeLa cells and not by “spontaneous transformation” of normal cells of the original donor, who must have been African-American.
This is not a “neurological” book but a bestseller with implications for all of us. Congratulations and thanks to Rebecca Skloot.
Dr. Rowland, chief editor emeritus of Neurology Today, is professor of neurology at Columbia University College of Physicians & Surgeons in New York City.