Here's a courageous book that tells a strange story based on a potent mix of scientific discoveries, deadly disease, racial discrimination, medical ethics, love and devotion.
O ften it is the sheer creative power of literary fiction, or the beauty of chiseled prose or the lyricism of poetic writing that propels one to write about a book. On some occasions, as in the case of The Immortal Life of Henrietta Lacks by Rebecca Skloot, it is the raw power of a true story and the commitment of a non-fiction writer to unearth that story that can leave the reader drawing in one sharp breath after another. This brave, scary, raw book in which “no names have been changed, no characters invented, no events fabricated” tells a strange story based on a potent mix of scientific discoveries, deadly disease, racial discrimination, medical ethics, love and devotion.
First, the bare facts: In October 1951, an African-American woman called Henrietta Lacks, descendant of slaves and a poor Southern tobacco farmer herself, died of a vicious case of cervical cancer at the Johns Hopkins hospital in Baltimore. Days before her death, and without her knowledge or consent, doctors took a slice of her tumour and passed it on to the laboratory of Dr. George Gey, who had been trying unsuccessfully to grow human cells. Henrietta's cells not only grew in Gey's test tubes but they multiplied at a terrifying rate. These cells, known as HeLa, after her initials, were not only packaged, gifted, sold and shipped across the world but also sent into space. Soon they became the standard workhorse of research labs the world over. If all the HeLa cells that have been produced were weighed, they would add up to 50 million metric tones and if laid out, they would wrap around the earth three times.
HeLa cells were used for studying cancer, gene-mapping, cloning, chemotherapy, in-vitro fertilization and several other areas of medical research; they were critical in the development of the polio vaccine. The sad part of the story is that for 20 years Henrietta's husband and children did not know that an entire medical industry had built up around her cells while they themselves could often not afford medical insurance. And the world did not know her correct name (sometimes the pseudonym Helen Lane appeared), or that she was black. It would take a further 30 years — until the publication of this book — for the entire story to come out. As for Henrietta, she was buried in an unmarked grave not far from the log cabin in Clover, Virginia where she had been raised.
Along comes Rebecca Skloot, a biology student turned science writer, who becomes obsessed with the desire to find out all there is about Henrietta Lacks and to tell her story.
Then begins a decade-long adventure during which she patiently and with tremendous empathy uncovers the details of Henrietta's impoverished past, her short and brave battle with her incurable disease, the miseries that befell her children.
The story emerges bit by bit, after hundreds of hours of interviews with Henrietta's close and distant family members, neighbours, cousins, doctors, scientists, other writers. En route we get rich, varied and disturbing glimpses into different aspects of American life of the early and middle 20th century.
Of beat-up, desolate strip towns in the middle of nowhere, of uneducated African-American children working from dawn to dusk in tobacco farms, of workers facing asbestos exposure, of the days when it was still acceptable to call people “coloured” and have “coloured” wards, examination rooms, drinking fountains, of a time when there was a Hospital of the Negro Insane.
We also visit with Skloot the murky world of scientific research, of the Tuskegee syphilis study where hundreds of African-American men were allowed to die slow, painful and preventable deaths and of Mississippi Appendectomies, where unnecessary hysterectomies were performed on poor African-American women, all in the name of research. And of an American doctor called Chester Southam who injected cancerous cells into hundreds of patients without their consent to prove a scientific point, only a few years after the Nuremberg trials where seven Nazi doctors had been sentenced to death by hanging for similar “research” without consent.
The emotional core of the book is the relationship that Skloot manages to establish with Henrietta's children, particularly with her resilient and character-laden daughter Deborah. For this she has to fight through their deep-seated fear about further exploitation, their sense of injustice about not being told what really happened to their mother, their poverty as against the advances made through use of her cells, their struggle to accept that in some ways their mother truly has become immortal.
Their search, as we see, is not only for material compensation but for emotional closure. As Deborah says: “People got rich off my mother without us knowin about them takin her cells, now we don't get a dime. I used to go so mad about that to where it made me sick and I had to take pills. But I don't got it in me no more to fight. I just want to know who my mother was………I want to know, what did my mother smell like? For all my life I just don't know anything, not even the little common things, like what color she like? Did she like to dance? Did she breastfeed me? Lord, I'd like to know that. But nobody ever say nothing.”
Closure comes, when Skloot manages to take Deborah and her brother into Hopkins and show them their mother's cells through a microscope, still living and dividing under their very eyes.
And further closure came this February when the State Legislature of Virginia resolved to “celebrate the life of Henrietta Lacks, in honor of all who have ever faced discrimination and exploitation, and her amazing legacy, which has altered medical research and care and relieved the suffering of untold millions.” This too would not have happened if not for this courageous book.
The sad part of the story is that for 20 years Henrietta's husband and children did not know that an entire medical industry had built up around her cells.