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Molly Hardy on "The Immortal Life of Henrietta Lacks"

Cover of "The Immortal Life of Henrietta Lacks": Henrietta Lacks standing

Rebecca Skloot

The Immortal Life of Henrietta Lacks

Broadway Paperbacks, 2010
381 pages
$16.00

Reviewed by Molly O’Hagan Hardy

In The Immortal Life of Henrietta Lacks, Rebecca Skloot weaves the story of Henrietta Lacks, a young African American woman in the segregated South who died of cervical cancer, with a complex discussion of biomedical ethics. This interplay between Lacks’s personal narrative and the morally ambiguous reaches of scientific discovery leads the reader to consider some big questions: What does it mean to be alive? In what ways do we own our bodies? How do we want to be remembered? Skloot’s work stands out not only because of Henrietta Lacks’s incredible story—her cells would lead to the curing of more diseases than any other singular development in medical science in the last century—but also because Skloot shows us what it means to grapple with ontological dilemmas through the story of Henrietta’s other, largely ignored legacy: her children. Skloot frames her story with grandiose section headings—“Life,” “Death,” and “Immortality”—but the narrative becomes intensely personal as she develops relationships with the objects of her inquiry. Skloot is the best kind of investigative journalist, remaining astutely aware of her situatedness in relation to the Lacks family and demonstrating the sensitivity of the best ethnographers.

 

Henrietta was born into a family of formerly enslaved persons in rural Virginia. Migrating to Baltimore to escape the poverty of Virginia, she and her husband moved to Turner’s Point, a close-knit community of blue-collar, black families. Henrietta raised her family there, and despite lingering poverty and systemic racism, the family thrived—until Henrietta fell ill. Desperate for proper medical attention, she took advantage of the free clinic at Johns Hopkins, where after a number of radium treatments, she eventually died of cervical cancer. In the course of Henrietta’s treatment, a sample of her malignant tumor was taken without her knowledge. Henrietta had a particularly aggressive form of cancer, and her tissue sample became the first cell culture reproduced in a laboratory. In fact, the “HeLa cells,” as they are now known, soon became a phenomenon in the medical research community. HeLa cells have been used to combat polio, map genes, and clone DNA. Though the doctors at Hopkins initially sent samples of the cells to their colleagues at no cost, the cultivation and transportation of HeLa cells have become a multi- million dollar industry. The Lacks family never saw a dime of that money; in fact, despite the many medical advancements owed to Henrietta’s cells, her children suffer from ailments that could have been better treated had they been able to afford health insurance. Henrietta’s children heard vague reports about the importance of their mother’s cells, but with little knowledge of biology, they struggled to understand how her cells were being used, and how they related to the mother they had loved. Deborah, Henrietta’s daughter, imparts the wisdom she has learned over the course of her journey: “If you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.” This philosophy guides Skloot’s journalistic endeavor as well.

Skloot carefully narrates Deborah’s story as she begins to uncover details about her mother’s past and learns about the complexities of cellular biology and medical ethics. Deborah and her siblings had been duped by reporters and con artists before; Skloot must therefore convince them that she is not “yet another white person wanting something from the family.” Deborah learns to separate what happened to her mother and what happened to her mother’s cells, and Skloot’s meticulous research enables Deborah’s process of uncovering what her mother might have experienced. Skloot enters Deborah’s life at a time when she is ready for this discovery; as she remarks, “People got rich off my mother without us even knowin about them takin her cells, now we don’t get a dime. I used to get so mad about that to where it make me sick [...] But I don’t got it in me no more to fight. I just want to know who my mother was.”

Skloot situates Henrietta’s story within the shameful history of using black bodies to advance medical science and protect white bodies, focusing mainly on the infamous Tuskegee Syphilis Study of the mid-twentieth century. Though Skloot does not equate injecting healthy African American males with syphilis to the researchers’ use of Henrietta’s cells, she does place Henrietta’s story within a national history of the instrumental use of the black body. One might want Skloot to make an explicit connection between Henrietta’s personal story and the ugly history of American slavery, but she only subtly suggests this connection when she visits Roanoke and learns about Henrietta’s enslaved ancestors. What exactly are the legal, ethical, and historical relationships between enslavement and what happened to Henrietta? Skloot leaves her readers to draw their own conclusions from this important question, but she offers much fodder for such an inquiry through the particulars of Henrietta’s experience at Hopkins. In the first part of the twentieth century, many scientists “believe[d] that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment.” Hopkins, with its free clinic for the local community, had no dearth of research material in the surrounding— largely poor and black—neighborhood. Skloot makes Baltimore and its racial history central to understanding Henrietta’s story.

Skloot ultimately offers a model for the scholar- activist. Her work has led to the founding of The Henrietta Lacks Foundation, which “strives to provide financial assistance to needy individuals who have made important contributions to scientific research without personally benefitting from those contributions.” In so doing, Skloot keeps her promise to the Lacks family: her interest is in publicizing Henrietta’s contributions, not in exploiting the family for her own gain. Skloot offers an alternative approach to journalism and suggests that to understand the legal and medical issues surrounding biomedical ethics, we have to understand the people from which the stuff of biology comes. In her afterword, which clears up any lingering legal questions, Skloot explains that, after Henrietta’s tissue was extracted, neither Henrietta nor her kin had any legal right to the many copies of her cells, neither in 1951 nor in 2009, when the book went to press. And yet Skloot is clearly not satisfied that the Lacks family was treated fairly, and this frustration leads to one of her greatest insights in the book. Explaining legal reasoning, Skloot uncovers one of the problems with the aporia in legal constructions of ownership generally: “People often have a strong sense of ownership when it comes to their bodies. [...] But a feeling of ownership doesn’t hold up in court.” These bodies, Skloot’s experiences with the Lacks family remind us, are not mere abstractions, nor are the subjects of her book. One wonders if the integrity of the book, which spent almost two years on the New York Times Bestseller List and has been selected for over sixty Best of the Year Lists, will be maintained when Henrietta’s story becomes the subject of a major motion picture.