CultureWatch Reviews:The Tiger's Wife and Henrietta Lacks

Science writer Rebecca Skloot first learned about HeLa cells as a sixteen-year-old in a biology class. A decade later, in the late 1990s, Skloot made the decision to write a book about the near-anonymous Lacks a woman who, if she was named at all in science communities, was often wrongly called Helen Lane.

In The Immortal Life of Henrietta Lacks, Skloot has written a compelling, if overly long, account that traces the effects of culturing Henrietta’s cells on her family, science communities around the world, and modern medicine. Skloot intends the book for a popular audience. Perhaps for this reason, she focuses on the family with occasional, unnecessary, soap-opera accounts of events and behavior. The views of ethicists might have helped to shape the book but by and large Skloot decided to let the family spell out their view of the ethnics involved, or to present them herself.

In 1999 Skloot gained an inch of access to the wary Lacks family through Roland Pattillo, a professor of gynecology at Morehouse School of Medicine who had organized a symposium in Lacks’s honor. On the phone he grilled Skloot on her motives, examined the depth of the white writer’s knowledge of the wrongful use of African Americans in science experiments, and only after days of talk gave her a phone number for Deborah (“Dale”) Lacks, Henrietta’s daughter. Pattillo also shared advice — be honest, don’t talk down, be compassionate, don’t be aggressive. Skloot immediately dialed Deborah Lacks’s number and became the person who would tell the story of Henrietta Lacks.

Two narratives vie for control of the story. One centers on the discovery and subsequent constructive use of the "immortal cells;" the other tries to square the shoddy treatment of the Lacks family with the state of the law and ethics governing human research in 1951. Skloots interweaves these narratives by alternating chapters. She begins with Henrietta Lacks’s childhood, the diagnosis of her illness, and then the extraordinary discovery of HeLa cells. Skloots moves back and forth, describing the advances made possible by HeLa while simultaneously portraying the lives of the working class Lacks family, husband and children shadowed first by grief and, later, by a science community that at minimum failed to understand the family’s need, and right, to be told of Henrietta’s contribution to the transformation of modern medicine.

Over decades HeLa was used to test the effects of steroids, chemotherapy drugs, vitamins, and hormones; they were infected with tuberculosis, salmonella, and vaginal bacterium; the cells helped make it possible to know what genes do, using them to map genetic traits to specific chromosomes.

Over these same decades, according to Sonny Lacks, Johns Hopkins did not give the family any information. Michael Rogers, a reporter for Rolling Stones who, in the 1970s, wrote an article about HeLa said of the Lackses, “They truly had no idea what was going on, and they really wanted to understand.” The family believed that Hopkins made millions from the cells. There is no record that Gey or Johns Hopkins accepted money for HeLa, but Skloots makes it clear that for-profit cell banks and biotech companies have, and that is before accounting for financial gain from the thousands of patents that involve HeLa cells.

Late in Skloot’s research, Zakariyya Lacks, Henrietta’s youngest son, summed up the beliefs of many in his family: the family was lied to, the cells were stolen, the family disrespected and left in poverty. Yet for his sister Deborah the narrative is more complicated: "When people hear about my mother cells they always say, ‘Oh y’all could be rich! You gotta sue John Hopkins …. But I don’t want that …. Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make."

The Immortal Life of Henrietta Lacks is both a cautionary tale and a call for justice. In 1951 no laws were broken when Henrietta Lacks’s cells were passed on to Dr. George Gey. State and federal laws of informed consent and patient privacy did not exist, or were in their infancy. In the patriarchal world of post-World War II physicians, patients took instructions and did not question. Still, the Lacks family, and Rebecca Skloot, believe that the ethical issues were and are real, that they were ignored by medical and science communities, and that a just accounting has yet to occur. Image from Amazon

Amazon: The Immortal Life of Henrietta Lacks in paperback

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CultureWatch Reviews:The Tiger's Wife and Henrietta Lacks

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