on The Immortal Life of Henrietta Lacks, by Rebecca Skloot (Crown Publishing)

Parts of the story of Henrietta Lacks have been told before – in a 1976 Rolling Stone feature, a 1986 university press title, a 1996 BBC program, in numerous newspaper and magazine articles through the years, and at symposia and conferences. While adding to the facts, Rebecca Skloot’s The Immortal Life of Henrietta Lacks is driven by an ambition to clarify Henrietta’s significance, to reveal and heal damage, and to educate and entertain a popular audience about a remarkable episode in medical science of continuing importance. In a sense, Henrietta’s story has never been written until now – because it can’t be told meaningfully without exposing issues of race, class, and institutional paternalism. Skloot covers all of this – but her book is compelling not only or even mainly for its content but its narrative art.

SklootHenrietta.jpgFor starters, here is the basic story of Henrietta Lacks as usually told – in other words, beginning with her death.

Just after the birth of her fifth child, doctors at Johns Hopkins Hospital in Baltimore diagnosed Henrietta Lacks, a 31-year old African-American woman, with cervical cancer and treated her with inter-uterine radium and then radiation. But the tumors spread aggressively. Before she died on October 4, 1951 at the age of 31, Dr. Howard Jones took a sample from her tumor without her knowledge or the permission of her family. There was no requirement for “informed consent” at that time. (The term was first used in 1957.)

SklootHelaCells.jpgShortly thereafter, a second sample was given to Dr. George Gey, the head of tissue research at Hopkins, who had been trying for years to develop line of immortal cancer cells in search of a cure for the disease. Henrietta’s ex vivocancer cells grew at unprecedented rates. Gey named the cells after her – HeLa – and began to make them available to researchers around the world. These imperishable cells allowed virologists to conduct formerly impossible research. HeLa cells were first used to develop the Salk polio vaccine in the mid-1950s, and then became omnipresent in research labs. Hopkins never marketed HeLa cells but several other corporations continue to do so. With a credit card and a signature on a materials transfer agreement, you can buy a vial of HeLa cells for $256.00.

First encountered in a high school bio class, the story of HeLa apparently left an indelible mark on Skloot – an imprint that recognizes its more traumatic counterparts in the Lacks family. The Immortal Life of Henrietta Lacks is powered by Skloot’s forceful urge to display what it takes to tell this story properly – starting with those most deeply affected by the experience, and working outwards from there. This is “narrative journalism” insofar as Skloot appears in her own telling. Although she worked on the book for almost ten years, the writing preserves the freshness of unfolding discovery, a narrative voice determined to probe and understand -- a confident, well-prepared, tonally impeccable, unintrusive performance.

SklootCover.jpgThe word “trust” has a central place here. By the time Skloot contacted them in 2000 to ask for interviews, the Lacks family, particularly Henrietta’s daughter Deborah, had spent years in the dark about the nature of Henrietta’s death and the spectacular emergence of HeLa. The first time Henrietta’s name was correctly stated in print was 1971, 20 years after her death. In 1973, Bobbette Lacks, the wife of Deborah’s brother Lawrence, learned from a friend's brother-in-law, who worked at the National Cancer Institute, that Henrietta’s cells were “alive” and for sale. Skloot writes:

“It was like a nightmare. She’d read in the paper about the syphilis study at Tuskegee, which had just been stopped by the government after forty years, and now Gardenia’s brother-in-law was a saying Hopkins had a part of Henrietta alive and scientists everywhere were doing research on her and the family had no idea. It was like all those terrifying stories she’d heard about Hopkins her whole life were suddenly true, and happening to her. If they’re doing research on Henrietta, she thought, it’s only a matter of time before they come for Henrietta’s children, and maybe her grandchildren.

That’s exactly what doctors at Hopkins did – in order to determine the genetic markers for HeLa cells which were so prolific that they were contaminating cell cultures in labs all over the world. But to the Lacks family, the call to have blood drawn for DNA samples, obeyed with respectful resignation without the benefit of a briefing, could only have conjured up rumors of doctors who kidnapped black people off the streets of the city to perform tests on them.

For years the Lacks family alternatively welcomed and rebuffed Skloot, speaking with disarming openness, then withdrawing. These episodes are described without filtering that could have made the Lackses too charming for the sake of reflecting well on an empathic intruder. On one occasion while traveling with Deborah Lacks, Skloot is thrown against a wall for having grinned at a remark, the smile interpreted as a sign of sinister intent.

SklootSmile.jpgSkloot relates the story of Henrietta’s short life and fatal illness, then follows HeLa cells from Hopkins to their involvement in the rapid modern evolution of medicine. The speed of these innovations and changes contrasts with the stasis and tragic difficulties in the lives of the Lackses. The issue of belated compensation for Henrietta’s cells is taken up at different points, including a bizarre episode with a litigious man named Cofield who impersonated a lawyer. Deborah articulated the family’s attitude when Skloot presented her with a large color print of her mother’s chromosomes at her hotel on the day they met:

“Deborah traced her mother’s chromosomes in the picture with her finger. ‘I do want to go see them cells, but I’m not ready yet,’ she said. ‘My father and my brothers should go too, but they think I’m crazy just coming down here. They always yellin about ‘Them white folks getting rich off our mother while we got nothing.’ Deborah sighed. ‘We ain’t gonna get rich about any of this stuff on my mother cells. She out there helping people in medicine and that’s good. I just want the history to come out to where people know my mother, HeLa, was Henrietta Lacks. And I would like to find some information ‘bout my mother. I’m quite sure she breastfed me, but I never knew for sure. People won’t talk about my mother or my sister. It’s like the two of them never born.’” Her sister Elsie had been institutionalized; part of this story uncovers the pathetic details of her treatment at an overcrowded facility called Crownsville. (Her youngest brother, Zakariyya Lacks, formerly known as Crazy Joe, served several years for killing a man).

In a fine afterword, Skloot discusses the main policy and ethical issues relating to the collection of tissues and the commercialization of genes. An accomplished popular science writer and editor, Skloot offers lucid and intriguing views of biological science through the book, woven into the main narrative about the Lacks family.

Skloot_0.jpgLawrence Lacks, an older brother, asked Skloot, “Can you tell me what my mama’s cells really did? I know they did something important, but nobody tells us nothing.” As Skloot eventually gains the family’s trust, she provides the answers, and the reader gets educated as well. This, in effect, is the book’s ultimate charm: As Skloot works to humanize Henrietta Lacks and give voice to the family’s longing for knowledge and vindication, the reader feels the same impulse. Rebecca Skloot has fulfilled her promise to be trustworthy, and wants her reader to be worthy of the same integrity by responding to the life pulsing in the facts. She makes it impossible not to do so.

[Published February 2, 2010, 368 pages, $26.00 hardcover]

aforementioned article about hela

The fact remains why is it that these private companies are allowed to profit on the cells of an impoverished woman. I understand why in the past, but now as of this day, why shouldn't the family receive a portion of any profits received. At the very least, the family that remains should at least be given something from the medical community in exchange for the past wrongdoing. Living cells are living cells, when you donate your body to science voluntarily, your family is compensated. The truth is everybody who used the cells without the knowledge or permission of the Lacks family, is continuing in the tradition of Tuskegee. Which is one of the many reasons why the african american communities refuse to trust doctors and the medical community. SHAMEFUL!!

Superior review -- but now comes the next question

Yours is the best review of the many I've read (and I've read the book and met the author, too). The book is mainly about one of Henrietta's daughters; the Hela material is an element in her story, but it's not what gives the book its punch. It's a wonderful read, but if the daughter had been no relation to any tissue donor it would have been almost as good.

Fans of Janet Malcolm's essay on the fraught relationship of writer to subject will know what comes next. The Lacks family gave up some cells that would otherwise have been discarded and the talented scientists and entrepreneurs did miraculous things with them and some spun them into gold. Now Rebecca Skloot has taken the lives of the Lacks family and made a best-seller out of their otherwise non-monetized story. Money is already pouring in; a movie deal is begin negotiated. Who deserves these profits? Would Skoot be bending too far over backward if she gave the a large share - as she hinted she may do, at least with any money that comes from selling film rights? Or the opposite? Stay tuned...

Dear Academic -- I believe

Dear Academic -- I believe Rebecca Skloot has set up an educational fund for the children of the Lacks family ... The final chapter of her book, discussing how tissues are still being taken from us every day without our permission or full knowledge of how they will be exploited, points to future commercialization and profits that will never be shared among the donors. RS

The Lacks's second inadvertent contribution to social wellbeing

Ron, Your are right, and setting up this Foundation reflects well on the author. In fact, as I wrote earlier, she mentioned the possibility that the family would get a lot, of not most, of any profits from selling film rights of the book.

In any case, I am not criticizing Ms. Skloot for how she has handled this question. For all I know, she's gone much further than anyone would have a right to ask her to. She's certainly done more than most book writers have done in similar situations, as far as I know.

But my question remains, I think. Suppose that this book becomes a huge bestseller (as perhaps it will) and earns millions. Ms. Skloot put a decade of her life into this book and without her great talent even that would not have been enough to create a book that would be so attractive in the book market. The Lacks family's contribution was to allow themselves to be studied and, in some instances, to befriend the author. If Ms Skloot decided to keep most of that money, would they have a legitimate beef? And if the answer is no, what does that say about their complaints about not benefitting from the culturing of HeLa cells? Ms. Skloot's wonderful book would have been even more interesting if she'd taken up some of these Malcolm-esque questions.

HeLa Cells

Ron, you probably know that we were using HeLa cells when you were running business operations at our company. These were for protocols we ran as part of the organ preservation project we conducted with the Israeli research team. So it's very interesting to me that in your literary life these cells are making another appearance. I went ahead and ordered Ms Skloot's book and look forward to reading the full story of HeLa. Thanks for doing this article. JS

On The Immortal Life

Rebecca Skloot has written much more than a biography; it's also a very important book. Better than a medal. Better than a statue. Even better than a commemorative stamp. Reading your fine review, it's heartening to know that such books are written. It's also heartening to know that immortality might be real, and that we the living might have proven it -- although some have done so shamefully. Alarming, however, is that we now learn that the immortals don't get to choose the terms of their immortality. (Clearly then, there is something very wrong. Henrietta Lacks didn't choose hers either, and yet she is very likely a hero.) If what lives on is hardly what we would choose for ourselves, then, before our atoms too rest on this earth, I suppose we can only try to redeem ourselves, slowly, with lots more care.