Skloot: The Immortal Life of Henrietta Lacks (3)

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Rebecca Skloot, The Immortal Life of Henrietta Lacks. New York : Crown Publishers, 2010. x + 369 pages; 8 pages of plates; illustrated; includes bibliographical references and index.

The Immortal Life of Henrietta Lacks tells the story of the discovery of the first immortal cell line (HeLa), named after the patient from whom the cells were taken during treatment for cervical cancer at Johns Hopkins in 1951. At the time, researchers had been trying to develop protocols for growing human cells in culture, so they could test new drug therapies, discover how cancer cells differed from normal cells, and examine the effects of toxins on human tissue. The cells taken from Mrs. Lacks were the first that didn't die within a few hours after being placed in culture medium. To this day, scientists don't quite understand why, what was special or different about her cells, that allowed them to grow.

This cell line has been sent into space, used to measure the effects of an atomic explosion on human tissue, proved that the polio vaccine was safe and effective, and has been instrumental in the development of cancer therapies. When I was an undergraduate, researchers in my department used HeLa cells for various types of research. I didn't work in their labs, so I don't know what kind of work they were doing, I just remember seeing the HeLa signs on the lab doors. My genetics lab professor mentioned HeLa once in class, saying, erroneously, that these immortalized cells came from a woman named Helen Lane. Since the cells seemed only tangentially related to my studies, I, like many of the scientists Rebecca interviewed in the course of writing her book, didn't think much about the woman from whom those cells came. That's the story of The Immortal Life of Henrietta Lacks.

It does not just explain the science behind the cells, but describes the life of a poor African-American woman in Baltimore in the 1950s, before Dr. King and Civil Rights and desegregation. A woman who died of an invasive and fast-growing cancer, leaving behind five young children and a husband. A woman whose cells were taken, and later commercialized by biotech companies, without her knowledge or consent. Whose children had samples taken years later, when it was discovered that HeLa cells were so hardy that they had contaminated many other human cell lines, by scientists who failed to adequately explain why the samples were needed. Whose family was badgered again and again for information about HeLa, when no one had ever taken the time to explain to them why Henrietta's cells had been needed for research, and all of the contributions she had unknowingly made to science. It's also about a writer, who over a decade gained the family's trust and became the bridge between the Lackses and the research community.

As a geneticist, I was humbled to learn that HeLa cells had led to many fundamental discoveries in my own field. They were used to prove that humans have 46 chromosomes (22 pairs of autosomes and 1 pair of sex chromosomes), instead of the 48 our species was believed to have at the time. That discovery led to the ability to diagnose genetic diseases resulting from gross chromosomal abnormalities such as Down Syndrome (caused primarily by an extra copy of chromosome 21) or Turner syndrome (resulting from a missing X chromosome). HeLa cells were used in early efforts to map genes to particular chromosomes; to develop techniques like "fluorescence in situ hybridization" (FISH) for staining chromosomes; and to understand the effect of Human Leukocyte Antigen (HLA) genotypes, which determine immunity, on organ transplantation.

Reading Henrietta's story puts a human face on the science that we do. The manner in which her cells were taken, while standard procedure at the time, would violate human subject's protections and Internal Review Board protocols in today'a institutions. As a scientist, I am saddened that her family was not properly and thoroughly consulted from the beginning. We have a responsibility to the public to ensure truly informed consent, and the cases mentioned in the afterword of The Immortal Life of Henrietta Lacks (including the Havasupai case) demonstrate how very far we still have to go. At the same time, Henrietta has made a profound and lasting contribution to human genetics. Much of the research done today would not have been possible without the early work with HeLa.

-- Notes by GKY