The Immortal Life of Henrietta Lacks, by Rebecca Skloot: 2010, Broadway Paperbacks. Pages 1-381. Price: $US16 (pb).

Reviewed by Dr Ian Freckelton SC

Skloot’s book about Henrietta Lacks tells the painstakingly researched story of the woman (and her family) who gave rise to the HeLa cell line which has become the most influential cell line in history.¹

Henrietta  Lacks  was  a  poor  black  tobacco  farmer  who  lived  in  Turners  Station,  a  small, segregated Baltimore community. She journeyed there in 1943 from a plantation town in Virginia, leaving her family behind, most of them still picking tobacco many years after they gained freedom from slavery. At the age of 31, and with five children, in 1951 Henrietta was diagnosed with an aggressive form of cervical cancer. A scraping of her cervix was taken and the cells conveyed to George Gey, head of tissue culture research at Johns Hopkins Hospital. He and his wife, Margaret, had been searching for a tool for the study of cancer: a line of human cells that would live indefinitely outside the body.

Their hope was that through such a discovery they would be able to observe and test human cells in ways that could not be done in humans, with a view to discovering a cure for cancer. Their efforts, until Henrietta’s cells were delivered, had not been successful. Latterly, at the request of Richard TeLinde, then Hopkins chairman of gynaecology, they had been focusing upon cervical cells. The cells were marked “HeLa”, to represent Henrietta’s name, placed in culture and then they started to grow “with mythological intensity. By the next morning they’d doubled” (p 40) and they continued to do so, continuing to double their numbers every 24 hours, growing 20 times faster than Henrietta’s normal cells “which died only a few days after M put them in culture. As long as they had food and warmth, Henrietta’s cancer cells seemed unstoppable.” It was not long before Dr Gey told colleagues that he thought his laboratory may have grown the “first immortal human cells” (p 41). He was soon met with requests to provide some of them to other researchers. It was 1951, the time of a polio pandemic so it was not long before testing took place with HeLa cells and the polio virus, enabling proof of the effectiveness of the Salk vaccine. However, not all uses to which Henrietta’s cells were put were so positive. Shortly afterwards the HeLa cells were used in the infamous Tuskegee syphilis experiments and the Ohio State Penitentiary cancer experiments. The view of many was that the 1947 Nuremberg Code did not apply to human research conducted within the United States.

The conclusion was soon arrived at that “the fact that HeLa was malignant just made it more useful. HeLa cells grew much faster than normal cells, and therefore produced results faster. HeLa was a workhorse: it was hardy, it was inexpensive, and it was everywhere” (p 97).

In the meantime, on 4 October 1951 Henrietta Lacks died of metastasising cancer after a time of intense pain, at the age of 31, without having given any consent to research using her cells. Her daughter Deborah was just one year old. Henrietta rests today in an unmarked grave in the cemetery across the street from her family’s tobacco farm in Virginia. Within weeks of her death most of her family tested positive to tuberculosis.

To say that the childhood and early adulthood of Deborah and her siblings was bleak and difficult is a gross understatement. Skloot tracked them down and tells their story, intersecting it with relevant developments in genetics, human research and legal decision-making in relation to such issues. In particular, she refers to the controversies attaching to the case that became known as Moore v Regents of the University of California 51 Cal 3d 120; 271 Cal Rptr 146; 793 P 2d 479 (1990), a decision of the Supreme Court of California in relation to a cancer patient at UCLA Medical Center where the plaintiff’s doctor, over a period of several years, removed blood and other bodily fluids from Mr Moore which eventually became a “cell line” called “Mo” and was patented for commercial use.

It was  these  actions,  without  his  consent,  that  were  the  subject  of  challenge  by  Mr  Moore  who complained that several extremely valuable proteins had also been created from his cell line without his permission. The California Supreme Court by majority held that no action based on the concept of conversion could be prosecuted where the subject matter of the allegation was excised cells taken in the course of a medical treatment. The majority held the cells in effect to have been abandoned by Mr Moore and no longer to be a product of his body, having been transformed into an invention that had become the product of his doctor’s “human ingenuity” and “inventive effort”.² However, the court accepted that an action potentially could be based on breach of fiduciary duty or lack of informed consent.

By the early 1970s Henrietta’s name was published as having given rise to the cell line. In 1985 Michael Gold, a science reporter, published a book about a campaign to stop HeLa contamination. It quoted extensively from Henrietta’s medical records in spite of the fact that neither Henrietta nor anyone in her family had given permission for such use. Deborah read the account in the book of the autopsy conducted on her mother and commenced a lengthy period in her life of intense distress, introspection and obsessionality. Skloot comments (p 211):

It wasn’t illegal for a journalist to publish medical information given to him by a source, but doing so without contacting the subject’s family to ask additional questions, verify information, and let them know such private information was being published could certainly have been considered questionable judgment.

In 1996 a documentary about Henrietta was made by a BBC producer. By the time that Rebecca Skloot commenced to speak with members of Henrietta’s family, they felt a deep sense of betrayal and that they had been taken advantage of by scientists and journalists alike. Skloot documents her efforts from 2000 onwards to engage them and persuade them of her bona fides, so that her own book would not occasion still more trauma for Henrietta’s family.

Skloot’s accounts of Deborah’s distress and sense of having been exploited, as well as that of Henrietta’s other children, are extremely powerful. She chronicles the assistance she provided to the Lacks family to understand better personal aspects of Henrietta’s life that were important to them and the use that has been made of her cells. A particularly moving moment documented by Skloot is when Deborah is presented with a colour image of the cells of her mother who died when she was so young. Later Skloot accompanies Deborah to a laboratory to see her mother’s cells. Deborah’s response, looking down the microscope was (p 266):

“They’re beautiful,” she whispered, then went back to staring at the slide in silence. Eventually, without looking away from the cells, she said, “God, I never thought I’d see my mother under a microscope … this is my mother. Nobody seem to get that.”

Skloot closes her book with reflection on how we as a community should deal with the commercialisation of human tissue. She acknowledges that we live in a market-driven society, with science being part of that market. She notes that the Lacks family has few legal options, given the passage of time and the proliferation of Henrietta’s cells. Her son told Skloot shortly before the book went to press that Deborah would not have wanted legal action taken: “and besides, I’m proud of my mother and what she done for science. I just hope Hopkins and some of the other folks who benefitted off her cells will do something to honor her and make right with the family” (p 328).

Skloot’s The Immortal Life of Henrietta Lacks is a memorable tale. It deals with conceptual and ethical dilemmas in a deeply human way. Highlighting the impact of the exploitation of Henrietta’s tissues without any recourse to the feelings or wishes of Henrietta and her family, it chronicles the very personal impact of  the existence and notoriety of the HeLa cells, dealing with the related scientific, medical, ethical and racial issues. There are ample portions of pain, grace and tenderness in the book. It is a work that reminds us that informed consent and exploitation of parts of the human body are issues that matter most because of  the effects that they have on people at  their most vulnerable and on those close to them. It is a book which fleshes out and gives meaning to such concepts that otherwise can seem theoretical and dehumanised.  It should be read by all with an interest in human research and the important contemporary issues in bioethics and the law.

1. See too Landecker H, “Immortality, In Vitro: A History of the HeLa Cell Line” in Brodwin P, Biotechnology and Culture: Bodies, Anxieties, Ethics (Indiana University Press, Bloomington, 2000); Skloot H, “Henrietta’s Dance” (2000) Johns Hopkins Magazine, http://www.jhu.edu/~jhumag/0400web/01.html viewed 31 July 2012.

2. Compare Doodeward v Spence (1908) 6 CLR 406.

The citation for this article is (2012) 20 JLM 216.