What are we to do with the waves of pain, humiliation and outrage that flood from the pages of The Immortal Life of Henrietta Lacks?
Not that I blame the author for the high emotions this story elicits. Rebecca Skloot did her job, and she did it expertly. As was the case with Harriet A. Washington’s award-winning Medical Apartheid (2007), Skloot connects the tributaries of scientific exploitation, identifies the patterns of medical abuse and calls them for what they are: a slow, inexorable tide of institutionally sanctioned injustice that has swamped generations of black Americans.
While the general terrain covered by Skloot has already been charted (by Washington and other journalists), the signal accomplishment of The Immortal Life is its excavation of hospital and medical records on Henrietta Lacks and its exhaustive interviews with her surviving family members. Skloot braids that compelling stream into a fluid accounting of the nascent history of cell research in America, creating in the end a riveting narrative that is wholly original.
In short, we learn the stunning news that in 1951, Henrietta Lacks, a poor, undereducated 31-year-old black woman from a small Virginia outpost, unwittingly “donated” cancerous cells that eventually spawned a molecular cottage industry—and aided hundreds of breakthroughs in scientific research on cancer and other diseases.
The dime-sized slices of Lacks’ doomed cervix were taken, without her consent, by a doctor assigned to treat her. Over the ensuing decades, those core cells replicated, “like crabgrass,” according to George Gey, a prominent Johns Hopkins geneticist quoted by Skloot in the book.
To the gleeful amazement of Gey—who first discovered the replicating, hearty properties of poor Henrietta Lacks’ cells—those bits of tissue became the molecular Rosetta stone that would revolutionize DNA research. Since then, they have seeded numerous biotech companies. And during the past half-century, some of these for-profit outfits have made millions of dollars by marketing the “HeLa” cells born from Henrietta Lacks’ body.
Meanwhile, Lacks’ heirs, like many workaday African Americans who came of age at the tail end of Jim Crow, blew through the window of economic prosperity that opened between World War II and the end of the civil rights era, only to find it slammed shut in the Reagan era. The surviving Lackses have struggled to find jobs, get good educations, stay out of jail and—fundamentally—keep their heads above water.
Their matriarch’s unique contribution to American scientific history has been more burden than boon, creating confusion and fear. In the case of Henrietta’s youngest son, Joe, it also created a deep pool of rage and anger that has nearly paralyzed him.
Lacks’ heirs are all too aware of the bitter irony inherent in their mother’s story: Henrietta’s “stolen” cells have furthered amazing scientific breakthroughs and reaped untold millions of dollars for private biotech companies … while most of the Lackses suffer from a range of debilitating “black folk” ailments (diabetes, high blood pressure, cancer and depression) and cannot afford health care.
That is the nutshell. But only by examining the fullness of Lacks’ story—the heartbreaking details of her austere, brief, but joyous life, her horrific death and the painful legacy that all that scientific notoriety bestowed on her heirs—do we truly get the whole story. Viewed (appropriately) within the larger context of medical abuses of blacks and the poor in America, the scientific advancements made possible by Lacks’ cells takes on a perversity of Grand Guignol proportions.
If The Immortal Life was a painting, it would be titled “The Outrage.” Lord knows I sure wanted to scream, especially when the details of Henrietta’s treatment wash forth:
“Her doctors tried in vain to ease her suffering,” Skloot writes, drawing on the medical records from the radium-heavy doses that Lacks received in “the colored ward” at Johns Hopkins Hospital in 1951. “Demerol does not seem to touch the pain,” so doctors tried morphine. “This doesn’t help too much either,” so they switched to Dromoran, which produced only temporary relief from the pain caused by the voracious cancer that had sprouted fields of pearlescent-looking tumors throughout Henrietta Lacks’ abdomen.
“Eventually, one of her doctors tried injecting pure alcohol straight into her spine,” Skloot writes. She next cites the doctor’s observational notes on Lacks’ chart: “Alcohol injection ended in failure.” Did any other cancer patient receive “pure alcohol injections straight into” their spine? Would a white, middle-class Baltimore woman have been given such a “pain treatment”?
When Henrietta Lacks’ youngest daughter, Deborah Lacks, finally gave Skloot her mother’s medical records, she effectively put the smoking gun of official medical and scientific negligence into the journalist’s hands.
These days, journalists and nonfiction writers from the old school can be heard muttering darkly that so much of what is published on the Internet lacks “context,” or at least, an appropriate respect for the same. The Immortal Life is easily the best evidence I have read to date supporting this truth: Without Skloot’s expansive documentation and clear descriptions of the relatively new field of cell research, the historic nature of Henrietta Lacks’ contribution to science wouldn’t have the same powerful impact. And without the fulsome history of Henrietta Lacks’ family—including her forbearers, and her offspring and their offspring—the hidden-in-plain-sight role that science and medicine have played in black subjugation, and its insidious fallout on generation after generation, would remain offstage.
Moreover, Skloot uncovers a sinister sci-fi aspect to the large bioethical questions that are bound up in contemporary DNA and cell research. That this rather arcane, inside-baseball segment of modern medical research is framed within the decidedly 19th century vehicles of slavery, Jim Crow and black oppression is a mind-blowing consideration. These days, DNA testing to uncover African-American roots (as does The Root’s editor-in-chief Henry Louis Gates Jr. in his PBS series, African-American Lives) is all the rage, coupled with feel-good “reveals.” But Skloot harnesses the science to rip down the curtain and reveal the medical and scientific community’s historic complicity, and on the long, terrible trails of tears that have resulted:
Black folk in America have been guinea-pigged, radiated, and otherwise hacked up by generations of ambitious and callous white medical doctors and researchers since the antebellum era. Case in point: Samuel A. Cartwright, a virulently racist doctor who coined the phrase “drapetomania” to describe the desire to escape slavery. Skloot’s decision to exclude the odious “contributions” of Cartwright, and his 19th-century counterparts, in favor of the reliable, third-rail standby The Tuskegee Syphilis Experiment, is a rare oversight in The Immortal Life.
But as badly as we have had it, it is illuminating (if cold comfort) to learn that plenty of white folks have been quite callously treated and ripped off by doctors and medical researchers, too, in the name of scientific advancement. If you think you own your body in perpetuity, including its most infinitesimal bits of tissue and secretions, think again—and read the fine print on any medical form that is put before you.
As for the question of how one should process the sadness and outrage that this book inspires? Here are two ideas: Visit the Web site of the Henrietta Lacks Foundation that Skloot has set up for the heirs of Henrietta Lacks—and make a donation. Then flood the mailbox of your local congressional representative, and demand that they quit screwing around and pass a health care reform bill that will actually improve our lives while we are still living.
Amy Alexander is a content producer in Silver Spring, Md., and she writes the online column, Amy Alexander Community Forum. Her next book, Minority Opinion: A Story of Race, Media, and Reinvention, will be published this year by Beacon Press of Boston.
Amy Alexander, an award-winning writer and editor in Silver Spring, Md., is the author of four nonfiction books, including Uncovering Race: A Black Journalist’s Story of Reporting and Reinvention. She has produced stories for the National Journal/Atlantic, NPR, The Nation, The Root and other outlets.