Knowledge, Culture and Immortality in the Story of Henrietta Lacks

Knowledge is power. This old adage is brought to new life in Rebecca Skloot’s bestselling book entitled The Immortal Life of Henrietta Lacks. Although a work of non-fiction, the text is written like a novel, complete with interesting characters and a plot line that drives the reader to the very last page. But this book is more than simply the story of one woman’s life. Rather, it contains two stories – the human and the scientific – whereby human foibles and frailties are set against ironclad scientific truths; knowledge for the people about the science becomes the key that unlocks the past.

The story of Henrietta Lacks is broken up into three distinct parts. The first section, entitled Life, deals with the mundane travesties of being an African American woman in the 20^th century. Indeed her short life – for she died just a few months after her thirty-first birthday – symbolizes all the worst of black life in the U.S.: poverty, poor educational opportunities, inadequate healthcare, physical and emotional neglect. Having met her cousin and future husband Day at the age of four, Henrietta spent most of her youth with him tending farm animals and picking cotton on a former plantation in rural Virginia. By the time she was fourteen, Henrietta had the first of five children. Eventually she also contracted a case of syphilis and a virulent strain of Human Papilloma Virus 18 (HPV) from Day, along with the cervical cancer which brought her short life to an end in October 1951.

Prior to her death, Lacks did manage to go to the hospital – Johns Hopkins in Baltimore, Maryland – for treatment of the cancer. Here, Skloot introduces the reader to researcher Dr. George Gey and his wife, Margaret, who were “determined to grow the first immortal human cells” (30) at a time when “more than 15,000 women were dying each year from cervical cancer” and “few doctors knew how to interpret [Pap smear test] results accurately” (29). Clearly the early 1950s represent an important turning point in the scientific community’s knowledge of cancer and cell tissue. The determinative work Gey did was foundational in the development of that knowledge. Along with Gey, the reader is introduced to Dr. Lawrence Wharton, Jr. It was Wharton who, during a follow up radium treatment visit that Lacks made to Johns Hopkins, “picked up a sharp knife and shaved two dime-sized pieces of tissue from Henrietta’s cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish” (33) and gave them to Gey. According to Skloot, no one told Lacks that samples would be collected, nor was she asked if she wanted to be a donor.

A third individual to whom the reader is introduced is Dr. Howard Jones, Henrietta Lacks’ gynecologist at Johns Hopkins, who described the lump he found on her cervix as “grape Jello” which bled when he touched it. According to Skloot, “Jones cut a small sample and sent it to the pathology lab down the hall for diagnosis. Then he told Henrietta to go home” (15). Of course going home was appealing advice for Henrietta Lacks, who considered “walking into Hopkins . . . [akin to] entering a foreign country where she didn’t speak the language” (16). This leads to the introduction of another important character in the story. Although Johns Hopkins is an institution rather than a person, it does figure largely in what happens to Lacks. Johns Hopkins was initially built in 1889 “as a charity hospital for the sick and poor” and by the 1950s most of the hospital was “filled with patients [who were] black and unable to pay their medical bills” (15). It was also the “only major hospital for miles that treated black patients” (15). Although Skloot does not overtly state it, Jim Crow segregation plays a part in the life – and death – of Henrietta Lacks.

The second section of the book is aptly labeled Death. Here the events surrounding Lacks’ death are riddled with rhetorical perplexities: would the circumstances of her death have been any different if she had been rich? white? lived in another era? went to a different hospital? The reader can never know the answers to these questions, but pondering them allows entrance into some of the most profound human interest elements of the story. On the fateful day when Wharton took the tissue from Lacks’ cervix, her cells began growing in Dr. Gey’s lab. And they continued to grow, even after Lacks died. Through this series of events the reader is drawn in to an exploration of the medical industry, medical ethics, profiteering from medical research and the science of cancer. The problem, as Skloot identifies, was that during the era when scientists were developing cell cultures “there was no formal research oversight in the United States” because “physicians and researchers always protested” against regulation, stating their “fear of interfering with the progress of science” (131). This section, while rich with medical jargon and legal precedents, is handled well by Skloot as she outlines the legal, ethical and moral dimensions involved in early cancer research. It is complicated material, made accessible to a lay reader. In short Lacks’ cells, which have come to be known as HeLa, were turned into a “multibillion-dollar industry selling human biological materials” (101) and used in scientific research. Skloot reports “some scientists exposed Henrietta’s cells to massive doses of radiation to study how nuclear bombs destroyed cells … [o]thers put them in special centrifuges that spun so fast the pressure inside was more than 100,000 times that of gravity” (102). Research with HeLa cells didn’t stop there however: “Cosmetic and pharmaceutical companies throughout the United States and Europe began using them instead of laboratory animals to test whether new products and drugs caused cellular damage” and some “scientists cut HeLa cells in half to show that cells could live on after their nuclei had been removed”(102). Although not comprehensive, this is a representative list of the eclectic ways in which HeLa cells have been used. Unbeknownst to her family, in the years after Henrietta Lacks’ death, her cells were all the rage on the global market, and they began – literally -- to take on a life of their own.

Entitled Immortality, the third section of the book is the longest, comprising nearly half of the entire text. In it, the reader learns much more about the family members of Henrietta Lacks, including her daughters Deborah and Elsie and her sons Lawrence, David “Sonny” and Zakariyya. And, of course, the title concept of the book comes from the ideas contained in this section. In the chapter called “The Secret of Immortality” the reader learns “how her cancer started and why her cells never died” (213), discoveries which were based on the 1980s research of a German scientist named Harold zur Hausen.

Apparently the HPV strain that Henrietta had acquired from her husband was also responsible for giving her the cervical cancer which killed her. Indeed, zur Hausen’s work showed that “Henrietta had been infected with multiple copies of HPV-18” and that it “caused [her] cervical cancer” (212). This happens when the virus “inserts its DNA into the DNA of the host cell, where it produces proteins that lead to cancer” (213).  In the case of Henrietta Lacks, the “HPV inserted its DNA into the long arm of her eleventh chromosome and essentially turned off her p53 tumor suppressor gene” (213). Amazingly because of HeLa, we now understand the long term impacts of exposure to HPV and the need for vaccination, particularly among young girls.

For members of the Lacks family, however, the medical explanation for Henrietta’s cancer and the immortality of her cells was challenging. They had their “own theories about why her cells grew so powerfully” (213). These included God punishing Henrietta for being disobedient, while the disease manifested as “the wrath of the Lord” (213). For the Lacks children -- individuals who had barely received elementary education -- spiritual explanations are much easier to grasp. Yet judgmental notions of Henrietta’s fate made way for other, more optimistic, explanations. This is the other immortality of Henrietta Lacks, and one that drives the reader back into the human side of the story: the family of Henrietta came to understand HeLa as Henrietta’s “spiritual body,” as though she “had been chosen by the Lord to become an immortal being” (296). The differences between science and faith are highlighted in the final section of the book. Indeed, while the Bible asserts that faith requires believing in that which one cannot see, science requires seeing as a primary element of the scientific method. Yet “[f]or Deborah and her family – and surely many others in the world – that answer was so much more concrete than the explanation offered by science . . . God chose Henrietta as an angel who would be reborn as immortal cells” (296). In the eyes of the Lacks family, Henrietta “did enough suffering for everyone down here” (309) and now she is watching them and waiting patiently for them to join her in heaven. In the end, the immortality of Henrietta Lacks is one where Henrietta and her family can be reunited and “do good together out there in the world” (310). The Lacks family “challenged everything [Skloot] thought [she] knew about faith, science, journalism, and race. Ultimately, this book is the result. It’s not only the story of HeLa cells and Henrietta Lacks, but of Henrietta’s family – particularly Deborah – and their lifelong struggle to make peace with the existence of those cells, and the science that made them possible” (7). Thus, in the end, the third section of the book leads the reader back to the very first pages, making for a neatly packaged narrative whereby style mirrors substance.

 

One of the more appealing ideas to emerge about the text is related to Skloot’s own evolution from student to author, and the implications it holds for all other students. In the Prologue, Skloot shares an experience she had as a teenager in a community college classroom. It was her first encounter with HeLa. She says “I first learned about HeLa cells and the woman behind them in 1988, thirty-seven years after her death, when I was sixteen and sitting in a community college biology class. My instructor, Donald Defler, a gnomish balding man, paced at the front of the lecture hall and flipped on an overhead projector. He pointed to two diagrams that appeared on the wall behind him. They were schematics of the cell reproduction cycle, but to me they just look like a neon-colored mess of arrows, squares and circles with words I didn’t understand . . . I was sitting in a college lecture hall at sixteen with words like mitosis and kinase inhibitors flying around. I was completely lost” (2). To this community college instructor who encounters students much like Skloot every semester, the scenario Skloot described resonates accurately. By their very nature, community college students often appear in the classroom without a solid educational foundation on which to stand. They typically lack context, and the study skills necessary to fill the contextual gaps. Beyond delivering content, the task of the instructor is to light a fire, spark a flame, infuse the individual with a spirit of inquiry that will carry the student forward into learning.

It appears that Defler did this for Skloot. She reports that “[a]fter class, [she] ran home and . . . looked up ‘cell culture’ in the index, and there [Henrietta] was, a small parenthetical” (4-5). This inquiry, however, was not the end of it. Several years went by and Skloot continued to search for information about Henrietta. Little did Skloot realize that this hunt for information served as the beginning of her research for the book she later ended up writing. Indeed, she claims that as she “worked [her] way through graduate school studying writing, [she] became fixated on the idea of someday telling Henrietta’s story . . . [she] had the idea that [she would] write a book that was a biography of both the cells and the woman they came from – someone’s daughter, wife, and mother” (6). The point here is that in a community college classroom, at the tail end of a lecture, Skloot learned about Henrietta Lacks. And then she carried that scrap of knowledge around with her for twenty years, steadfastly adding to it whenever she could, before eventually producing The Immortal Life of Henrietta Lacks. She went from being a clueless teenager who did not understand the words on the wall to writing a book that revealed the value of HeLa cells and the person of Henrietta Lacks to millions of readers. And if she can do it, so too can any community college student. While the book, its back story and its author can be inspirational to students and their teachers, Henrietta is an inspiration to all.

The Immortal Life of Henrietta Lacks challenges the reader to explore the impact of racism on the individual in the United States. One of the ways injustice against African Americans has historically been perpetuated is by locking them out of the systems and processes of acquiring knowledge. Separate but equal was the law of the land, as established by the U.S. Supreme Court case Plessy v. Ferguson at the end of the 19^th century. Education, particularly before Brown v. Board of Education was decided in 1954, was notorious for under-funding and disenfranchising people of color. Access to knowledge and education and, thereby to power, was limited. Thus black people in the United States could not know what they did not know. Henrietta – who was born in 1920 and died in 1951 -- lived her entire life under these conditions.

            As one reads the text, the chasm of experience between black daily realities and white mainstream America is profound. Henrietta never went to school past the sixth grade. Yet all of the doctors who performed work on her body or with her HeLa cells each completed years of education beyond the elementary level. Henrietta received questionable medical treatment, and her family members struggle – even today – to obtain adequate health care for their myriad poverty-related healthcare issues. Indeed, Henrietta’s son Zakariyya perhaps said it most poignantly: “Them doctors say her cells is so important and did all this and that to help people. But it didn’t do no good for her, and it don’t do no good for us. If me and my sister need something, we can’t even go see a doctor cause we can’t afford it. Only people that can get any good from my mother cells is the people that got money, and whoever sellin them cells – they get rich off our mother and we got nothing” (246-247). Ironically the medical institutions which benefit from researching HeLa cells cannot provide basic health care services for the living family members of Henrietta Lacks.

            This, then, reflects the irony: scientific research benefits science but not individuals. It becomes science for science’s sake. Clearly the research performed with HeLa has not benefited Henrietta or the living members of her family. Scientific knowledge is advanced on the backs of Lacks family suffering. And the only reason the world knows as much as it does about Henrietta Lacks is due to the tenacious inquiry of Rebecca Skloot. It is as though the cells in Henrietta’s body become a metaphor for what is wrong in U.S. society. Years ago, Professor Defler described the process of cell division to young Skloot and her classmates: “[a]ll it takes is one small mistake anywhere in the division process for cells to start growing out of control . . . [j]ust one enzyme misfiring, just one wrong protein activation, and you have cancer. Mitosis goes haywire, which is how it spreads” (3).  The cell division that went haywire in Henrietta’s body serves as a poignant symbol for the cancer in our society: of race relations which allow some people access to education while forbidding it for others based on the misfired perception of skin color. Of institutionalized racism which mistakenly divides groups of people between those who can enter any hospital from those who can only enter one hospital: Johns Hopkins.

Scientists call the entity which consists of cytoplasm and nucleus a cell. The cell, when held outside the body, is cultured much like the individual who lives in society is fostered in a culture. The cell division of our society – the cultural chasm between black and white – is as much a cancer as any mitosis, poignantly illuminated by the billion dollar industry that sprang up from a poor, and poorly educated, share-cropper’s cells. Ultimately Henrietta’s life and death, along with the immortality of her cells, has become a clarion call to us all. We must challenge the cell divisions of society based on perceived notions of race. We must use the knowledge we have acquired – scientific and humanistic – to honor those who sacrifice parts of themselves in the advancement of society. Skloot’s book brings us this opportunity. In the challenging and the honoring, we would do good together out there in the world.