Racism and Health: Henrietta Lacks Revisited

The life of Henrietta Lacks is the subject of a new book, The Immortal Life of Henrietta Lacks by Rebecca Skloot.   Ms. Lacks is a notable historical figure for her unwitting “donation” of her cells to scientific study.   David Strohecker wrote about Ms. Lacks’ here back in October, around the 50th anniversary of her death from cervical cancer.  Dwight Garner gives Skloot’s new book a rave review in The New York Times (hat tip: Jessica in Austin), and here’s a longish clip from that review:

“The woman who provides this book its title, Henrietta Lacks, was a poor and largely illiterate Virginia tobacco farmer, the great-great-granddaughter of slaves. Born in 1920, she died from an aggressive cervical cancer at 31, leaving behind five children. No obituaries of Mrs. Lacks appeared in newspapers. She was buried in an unmarked grave.

To scientists, however, Henrietta Lacks almost immediately became known simply as HeLa (pronounced hee-lah), from the first two letters of her first and last names. Cells from Mrs. Lacks’s cancerous cervix, taken without her knowledge, were the first to grow in culture, becoming “immortal” and changing the face of modern medicine. There are, Ms. Skloot writes, ‘trillions more of her cells growing in laboratories now than there ever were in her body.’ Laid end to end, the world’s HeLa cells would today wrap around the earth three times.

Because HeLa cells reproduced with what the author calls a ‘mythological intensity,’ they could be used in test after test. ‘They helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization,’ Ms. Skloot writes. HeLa cells were used to learn how nuclear bombs affect humans, and to study herpes, leukemia, Parkinson’s disease and AIDS. They were sent up in the first space missions, to see what becomes of human cells in zero gravity.

Bought and sold and shipped around the world for decades, HeLa cells are famous to science students everywhere. But little has been known, until now, about the unwitting donor of these cells. Mrs. Lacks’s own family did not know that her cells had become famous (and that people had grown wealthy from marketing them) until more than two decades after her death, after scientists had begun to take blood from her surviving family members, without their informed consent, in order to better study HeLa.

Ms. Skloot tells the story of Mrs. Lacks’s life, from those tobacco fields in small-town Clover, Va., to the ‘colored’ ward of Johns Hopkins Hospital in Baltimore in the 1950s, where she was treated for her cancer, and where her cells were harvested. She follows the members of Mrs. Lacks’s family to East Baltimore, where many of them live today, still struggling with her complicated legacy. As one of Mrs. Lacks’s sons says: ‘She’s the most important person in the world, and her family living in poverty. If our mother so important to science, why can’t we get health insurance?

Ms. Skloot writes with particular sensitivity and grace about the history of race and medicine in America. Black oral history, she points out, is full of stories about ‘night doctors,’ men who could pluck black patients off the streets to experiment on their bodies. There was some truth behind those tales.”

While I’m glad that Ms. Lacks’ story is getting the attention it deserves in this new book, it would be mistake to regard this compelling narrative as an anomaly in U.S. history.   Rather, the experience of Ms. Lacks and her descendants is in many ways an archetypal story about racism and health in the U.S., as Harriet Washington documents in her thoroughly researched book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.