Henrietta Lacks Lives!

THE IMMORTAL LIFE OF HENRIETTA LACKS

By Rebecca Skloot

Crown, 2011, ISBN: 978-1400052172

The next time your doctor hands you a HIPAA form, think of Henrietta Lacks. It that name rings no bells, you’re not alone, though she’s indirectly responsible for some of the most important medical breakthroughs of our time, including a vaccine for polio. Even most medical researchers know her only as HeLa, the name of the world’s most important cell culture. So who was Henrietta Lacks? That is the question medical journalist Rebecca Skloot sets out to answer. This is a non-fiction book that reads like a novel colliding with a gripping episode of CSI. What’s the crime, you ask? The ongoing tragedy of racial and class injustice in America.

The basic story is simple enough. Henrietta Lacks was an African-American woman who came of age in a backwater Virginia town. She eventually relocated to Baltimore, where her husband (and cousin) David “Day” Lacks followed the Great Migration north during World War II, to the Sparrows Point steel mill that hired black laborers. Henrietta bore five children and shortly after her last, Joe (now Zakaryya Bari Abdul Rahmann), she went to Johns Hopkins Hospital, which took in black charity cases. At first, gynecologist Howard Jones found no cause for the pain about which Harriet complained, but before 1951 ended, Lacks was dead from uterine cancer. An autopsy revealed a body filled with pearl-sized tumors, the source of her excruciating demise. As was standard practice during the day, doctors took several tissue and tumor samples from the body before Lacks was laid to rest.

What happened next was—depending on one’s beliefs—either a fortuitous fluke or a miracle. Dr. George Gey had been trying for a decade to grow cells in his lab, to no avail. His entire research model was suspect, courtesy of a 1912 hoax in which Dr. Alexis Carrel claimed to have cloned chicken cells. (Carrel faked the results, the medical equivalent of Piltdown Man.) Much to the astonishment of Gey and lab assistant Mary Kubiak, however, Henrietta’s cells began to divide and replicate the moment they were suspended in culture. Since 1951, HeLa cells have been shipped all over the world and have been the subject of thousands of medical experiments. Henrietta’s cells continue to replicate to this day. They are also the only ones that have ever behaved this way, and no one really knows why.

Skloot tells the cellular story with a clarity that made me wish she had been my high school biology teacher. After her lucid account, you will come to see HeLa as a literal lifesaver for millions. But the question remains: Who was Henrietta Lacks? And that story is often as painful as Henrietta’s final days. Skloot begins with the obvious: In 1951, nobody gave a damn who she was—she was just another black charity case in a Jim Crow city. The researchers thrilled to work on her cells never asked about the donor; stories circulated that her name was Helen Lane. Even worse, none of Henrietta’s family knew of the existence of her cells until 1973, nor thought much about the times they were asked for blood samples that they thought were cancer-screening tests. It took a 1975 Rolling Stone article to reveal that the HeLa line was contaminated in the 1960s and that the blood samples were used to identify Harriet’s DNA from the intruders. It was then that the Lacks family also learned that HeLa was sold around the globe, though the family never realized a dime in these transactions.

Skloot puts a face to the cell line. After a hard fought battle to win the family’s trust—no easy feat for a 27-year-old white gal—she forensically reconstructs Harriet’s life, from her childhood and adolescence in Clover, Virginia, to her final days. Like all lives, it was filled with joys and sorrows; being a poor black woman, there were more of the latter than the former. Skloot does a superb job of unearthing the details of not just Harriet’s life, but also those of her extended family. It is a story of race, poverty, and class, one in which the principals of the medical field inhabit a different world governed by different ideologies than that of underclass (and undereducated) black folks. One of the book’s many delights is observing the intellectual development of Deborah, Harriet’s fourth child, who wants to discover the truth about her mother. But there are some gulfs that can’t be overcome, like the ones that lie between the dispassion of the lab and the everyday racism that drove Zakaryya to cold fury, or between the empirical world of science and the faith-based world of evangelical Christianity. To some in the Lacks family, Henrietta’s cells are a literal form of immortality, imbued with her consciousness and will.

Skloot is a participant observer of the most-noble sort, a writer who helps heal a lot of mistrust and hurt. (She’s even set up a Henrietta Lacks memorial foundation.) Although she’s clearly sympathetic to the Lacks family, she’s also an empiricist. Skloot even-handedly tells the story of Henrietta’s cells, and leaves open all questions of whether the ends justify the means in medical research. As I warn students, it is a mistake to impose the values of the present upon past actors. Informed consent laws did not come into being until 1957, and the National Institute of Health had no research review boards until 1966. Gey and his research team may have been insensitive, but they were well within the ethical operating parameters of their day. And, as Skloot also shows, morality is even muddier when it comes to bodily materials removed in the operating room. Do individuals own discarded tissues and cells? Lawsuits are pending, but to date the courts have ruled that these things are akin to garbage tossed in the local landfill and scavenged by others. That’s hardly a satisfactory answer for patients or physicians, as it leaves ambiguous the question of privacy versus research/public good. That HIPAA form you’ve signed a hundred times is one of the many ways doctors seek to protect themselves. Call it a small measure of posthumous respect for Harriet Lacks.