'The Immortal Life of Henrietta Lacks'

'The Immortal Life of Henrietta Lacks'. Creative Commons

When Rebecca Skloot was a teenager slogging through her first biology course, she never imagined a brief lecture on HeLa cells would change her life. She became captivated by the photograph of a young woman, whose name was debated by different media and whose cells made immeasurable contributions to the world of science.

The woman’s name was Henrietta Lacks. She grew up poor on a tobacco farm south of Baltimore. When she was 30 years old, she contracted cervical cancer and traveled to Johns Hopkins University hospital for treatment (which, at the time, involved sewing bars of radium inside her cervix and charring her with radiation). Meanwhile, doctors snipped a wee piece of her tumor without her knowledge and cultivated the first “immortal” cells grown in culture.

These cells, named HeLa from the first two letters of each of Henrietta’s name, would travel on the first space missions, help develop the polio vaccine and medications for HIV and influenza and most illnesses treatable today. The HeLa cells are, in fact, used so pervasively that every scientist in the world is likely to have worked with them — even teenagers snoozing through biology lectures.

There are volumes of publications discussing the HeLa cells and their many uses. But when Skloot asked about the woman who gave them, she was met with shrugged shoulders. Henrietta’s family, it seems, knew nothing of the immortal legacy their mother left behind, and the world at large knew relatively little about her.

Telling the story

A decade later, Skloot sat in a Starbucks in Pittsburgh trying to figure out a topic for her MFA creative nonfiction thesis. The story of Henrietta Lacks consumed her. How could we know nothing about the woman whose cells became so powerful that they clung to dust particles and traveled through the air to contaminate everything in their path? It turns out Skloot wasn’t the first person to come searching for the Lacks family. Once they found out about the trillions of dollars being exchanged for those “stolen” bits of their mother, once the world learned their identity and came seeking blood samples for gene mapping, the family (still gripped by poverty, ailing, and unable to benefit from the medical advances their mother helped develop) turned a cold shoulder to the outside world.

But Skloot’s combination of compassion, dedication to revealing the truth, and brazen persistence eventually prevailed. For 11 years, she chased this tale through laboratories, the streets of Baltimore, and the inner world of a family ripped apart by privacy violations and scientific decisions of questionable ethics.

The resulting book, "The Immortal Life of Henrietta Lacks," weaves Skloot’s own journey to find the truth into a shocking narrative that tackles issues of class, race and ethics via vivid scenes and haunting facts. The author artfully breaks down scientific processes for the lay reader (she at one point describes Lacks’ tumors by writing, “her ... organs were so covered in small white tumors it looked as if someone had filled her with pearls”) while creating white-knuckle suspense, making it impossible to stop reading.

Skloot spends a great deal of space detailing the struggles she went through to speak with the Lacks family, passing various “tests” they set to see if she was just another white person hounding them for information or tissue samples. It becomes abundantly clear how the family came to view the advances from HeLa cells as “the stuff of racism, creepy science fiction, Nazis, and snake oil.” The residual effects of the scientific community’s mistreatment and dismissal of the Lacks’ privacy and informed consent are driven home with every telephone receiver slammed in Skloot’s ear.

Her readers shiver with her as researchers first show Deborah Lacks (Henrietta’s daughter) a freezer full of HeLa cells. We ache together as Deborah whispers to the cells, tries to warm them in her hands as if her mother could feel the cold. It is with these and other evocative scenes in mind that we gasp at Skloot’s conclusions. We are in many ways dependent on and powerless to affect the scale of tissue research. As trends tip toward commercialization of these “donations,” we all leave behind each time our bodies get pricked, it becomes essential that investigative journalists like Skloot exist to keep our humanity in the foreground.

A movie version of the story premieres on HBO April 22, 2017, starring Oprah Winfrey as Henrietta's daughter Deborah and Rose Byrne as Skloot.