Henrietta Lacks and HeLa Cells
This book is comprised of many stories: the story of Henrietta, the story of her cells and their science, the story of her family members, especially her daughter Deborah, and the story of the author and the book itself. None of them is simple and all are interwoven. I’ve summarized the book by these stories to better highlight our themes and questions.
The Story of Henrietta
Henrietta grew up on a tobacco farm in Clover, Virginia, habiting the same land as her slave ancestors. She and her nine siblings and cousins lived divided among aunts and uncles and helped with the farming. They did not have the ability to change or improve their situation. She eventually married her cousin Day (David) Lacks after having their first child at 14, the second at 18. Elsie, the second child was born with mental disabilities and took a great deal of care. They moved to Turner Station near Baltimore for jobs related to World War II efforts.
In 1951, not long after Henrietta gave birth to Joe, her fifth child, she was referred to a gynecologist at Johns Hopkins due to concern about a knot in her abdomen. Gynecologist Howard Jones found a quickly growing growth on her cervix. Actually, Henrietta had known about it for a year, but her healthcare tended to be connected to the births of her children. Johns Hopkins was the only place that would treat her because she was a black woman. Adding to her challenges, she had five children including Elsie at home to care for. Gender, race, and poverty clearly hinder her quick or ready access to the care she needs.
At Hopkins, Henrietta signed a consent form for operations under anesthesia that her doctors deemed necessary. During grueling radium treatments, Dr. George Gey took both healthy and cancerous tissue samples. Henrietta did NOT know about or give permission for this. Doctors commonly conducted experiments in the public wards, where mostly black patience could not pay fully for their treatments. Perhaps they considered it a fair exchange. Very quickly Gey’s assistant Mary Kubicek notices that her cells have grown exponentially, possibly becoming the first “immortal” cell line.
Henrietta continued treatment, her suffering increasing until she could not walk to and from her appointments to her friends’. And she could no longer take care of Elsie. They eventually committed Elsie to the Crownsville Hospital for the Negro Insane, where she died alone after Henrietta. In the summer of ’51 Henrietta was sure her cancer had returned, but her doctor’s didn’t agree. Within a month, however, when Henrietta was in great pain, they found another pelvic tumor, and she was finally admitted to the hospital. By September, her body was riddled with tumors, causing damage to her kidneys and keeping her in great pain. She died on October 4, a month later. Her cancer journey was short and excruciating; her family hardly knew what was going on. Hardship and poverty were the themes of her life. Who knows what might have been different if Henrietta had been white.
This is the end of Henrietta’ story, but certainly not her cells’.
The Story of HeLa Cells
When George Gey and his assistant Mary Kubicek began to study the tissue samples that were taken by her surgeon for Gey, they had no idea what would be ahead of them. Gey had been in search of “immortal” cells that would continue to reproduce, something that had been elusive to all cell scientists.
Gey’s fixation was a cure for cancer. To this end, knowing that HeLa cells (named by a standard lab system) could be instrumental in cancer research, he shared them willingly with other scientists. He spoke about them on television merely six months before Henrietta’s death. On her death, Gey had to ask her husband Day several times for permission to perform an autopsy (required for tissues from the dead, though not for the living). He swayed Day with the idea that his tests could someday help her children—not exactly untrue, but certainly not accurate, either.
The Tuskegee lab managed HeLa cells, and shared them for studies of viruses, tissue culturing, cell cloning exercises, and invaluable studies in genetics, among others. When Tuskegee couldn’t keep up with the demand, private industry stepped in. The result was the first for-profit cell distribution company that was able to serve larger institutions like the National Institute of Health. Tuskegee couldn’t compete; consequently, black scientists there lost the rare autonomy and opportunities they had there as black researchers. Throughout all of these transactions, the Lacks family was ignorant that the cells even existed. Gey’s generosity with the cells was certainly well-intentioned, but at what loss to Henrietta’s bodily integrity or her family’s appreciation?
Some of the experiments done with HeLa cells were also done on other vulnerable populations. Following up on a cancer spreading test, Dr. Chester Southam invited inmates at the Ohio State Penitentiary to participate. He injected their arms, and tumors grew as a result. These inmates were often willing to participate to try to balance the harm they had caused that had put them in prison. However, Southam did not inform them that he was injecting them with cancer cells. When he wanted to perform similar experiments at the Jewish Chronic Disease Hospital in New York, Jewish doctors refused, comparing his practices to that of Nazi doctors in World War II and citing the Nuremberg Code. Eventually Southam and his partner were censured and put on probation by the state, and a spotlight went to experimentation on human subjects. The NIH called for scrutiny and review boards—slight progress.
By the 1960s HeLa cells were in use all over the world. They’d even been to space. They were also causing problems. HeLa cells, it turned out, were so perniciously persistent that they were contaminating cell samples around the world also. Millions of dollars of experiments were proven unusable because the cells the scientists they thought they were using were actually HeLa cells. Over time, though the war on cancer and publication of more articles, Henrietta’s name started to trickle out, sometimes correct, sometimes not. Some journalists became curious, but except for a Rolling Stone story, the disconnect between the woman and her cells was vast. As a woman, Henrietta may not as well have even existed.
In the 1970s, a man named Ted Slavin learned from his doctor that his cells, due to their ability to produce concentrations of specific antibodies valuable to researchers, were valuable. He created his own business so that he could sell his antibodies and help others profit from sales of their own. Before this another man, John Moore, realized that he had signed away his valuable cells and a patent for them. By then the cell line was worth billions. He fought with a lawyer, but the courts decided he had signed away his rights and could not assume possession again after the patents were drawn. Both of these men, white and with means, had the education, status, and ability to challenge or benefit from the use of their cell lines, in sharp contrast to Henrietta’s situation. This issue is complex, though. Requiring patients to give consent for tissue removal could hinder or slow down access to cures and treatments. On the other hand, if one’s tissues bring in fortunes for the medical industry, should one not benefit from that? Do the rights of one outweigh the benefit to possibly millions? In Henrietta’s case it would not have been an option.
Deborah Lacks and Her Siblings
One of the essential questions of this unit is What role does race and/or gender play in healthcare access? The Lacks family is a case study. Henrietta left five children: Lawrence, the eldest; Elsie, committed to the mental hospital; Sonny, the middle son; Deborah, and Joe, the youngest, who later became Zakariyya Bari Abdul Rahman. Despite their different personalities, they each had scars from not knowing their mother and the traumatic experiences they had growing up without her, and for the most part without their father Day. Hearing problems ran in the family, including Henrietta, but none were ever treated.
They all grew up in poverty and varied households in the period of Jim Crow. Day did not heed Henrietta’s last wish to take care of the children. Ethel, who hated Henrietta, and her husband Galen moved in to care for the children, but they fed them little and were physically abusive. Lawrence, the only one to have memories of Henrietta, was angry with Hopkins and wanted to sue. He dropped out of school after Henrietta’s death. He discouraged Deborah from pursuing her mother’s story and speaking with journalists. Sonny was the moderate one, the middle child, and maybe the most objective. Joe’s and Henrietta’s lives overlapped only briefly. Joe’s pain and trauma drove him at least indirectly to conflicts with the law and a prison sentence for murder. He sought solace from religion in prison. He attributed his anger and mental issues to the lack of his mother and the abusive situation he grew up in instead. They all had limited schooling, making it harder to understand HeLa and the medical research world once they were exposed to it. Certainly, their fates were determined a great deal by their race and their poverty at that time.
Elsie’s fate was the worst of all, not only because she was deaf and had seizures and mental disabilities, but even more because she was black. She spent years in Crownsville, where she was sent for better care than she could receive at home. Deborah learned eventually that the institution for black “insane” patients was worse than she could have imagined. A current local newspaper reports that, “at its worst, the hospital’s story testifies to how African-Americans who were sick or mentally ill were abandoned or used for experimental research that modern medical professionals would finds repulsive” (Gazette).9 In a horrible twist, it turns out that Elsie was also very likely the victim of inhumane experiments performed on epileptic children at Crownsville. A photograph of her shows the neglect she lived with.
It is through Deborah’s experiences with the author that we become intimate with the stories and with Henrietta. Deborah wants to learn about her mother who has become an abstraction in the shadow of her cells. It seems that everyone knows about her cells, but Henrietta herself had disappeared. Deborah was frustrated with doctors telling her how miraculous her mother’s cells are and how many lives she saved while Deborah and her family are fairly poor and have sufficient healthcare access.
She wanted to know her mother so badly that she defied family initially to work with the author. Her young life was hard. Like much of her family she was hard of hearing and didn’t do well in school. She married young to escape Galen who molested her. Her health was poor; her lifestyle and lack of medical access shadowed her until her relatively young death. Rebecca Skloot is the answer to her quest, but also an unknown, a white author from an unknown and untrusted world. Her relationship with Skloot was complex and fraught with drama, but it brought her some answers she’d dreamed of. The relationship between Debora and Rebecca drives much of the narrative.
Rebecca Skloot and the Book
Rebecca Skloot became interested in HeLa cells in a community college biology class. She learned nothing then except that the cells had belonged to a black woman—enough to pique a little interest. Her journey to the Lacks family and friends took her years and across several states. She had to court the family, help them through their fears and prejudices, especially Deborah carefully. The book is partly a story of her journey to get pull all of these stories together. She educates and advocates for the family. I spend less time with Skloot to focus on issues that relate to our key questions, but we will read one article in class that criticizes the author for exploiting and “reinscribing simplistic notions of black identity” (Hooks 84).10
Outcomes
This year marks Henrietta’s 101st birthday. Surely by now we have made some progress towards ethical practices in medical research in terms of race. However, the National Institute of Health is less likely to fund black researchers. Research involving health disparities based on race rarely get funded. Black individuals are less likely to participate in clinical trials based on mistrust of the bio-medical research community (Wolinetz 1027).11 Still, in the last decade, we have seen some specific positive outcomes.
The director of the NIH, Francis Collins, calls for the medical community to create industry-wide reforms to “demonstrate its respect for all humankind by seeking consent from individuals who contribute literal pieces of themselves to medical research” (Wolinetz 1027).12 In 2011 the provisions to the Common Rule included a proposal to require consent from all biomedical specimen donors. There were too many problems with implementation at the time and by 2017 it was removed from the final document, but the NIH is still moving forward with its mission.
In 2013 the NIH came to an agreement with the Lacks family descendants regarding the use of HELa cells. The agreement requires that “any HeLa genomic information from NIH-associated studies be deposited in NIH’s database of genotypes and phenotypes” (Greely 849).13 All publication using the data must acknowledge Henrietta and her family. These are first steps, the first to request permission from descendants from any Lacks family member. The agreement only applies to the work of the NIH or associates. In the future, donors must have to opportunity to make clear how their biospecimens may—or may not—be used. With modern genetic advances, it is becoming less and less likely that genetic specimens will be able to avoid identifiability, making this more essential than ever.
Henrietta Lacks Resources
We’ll read the book in class; sometimes we’ll divide chapters and report back to save reading time. I have isolated three (tentatively) articles about the book, one celebrating the authors work and diligence in bringing the Lacks’ situation to light and her continuing advocacy of them. Another looks more closely at the text, including selected biographical content, in which Skloot is criticized for her portrayal of certain family members that seem to indulge colorful black stereotypes and credibility. The third Thirteen Ways of Looking at Henrietta Lacks,” while prose, not poetry, follows the model of the Wallace Stevens poem Thirteen Ways of Looking at a Blackbird, which makes the point that what we see on the surface is only a fraction of what is going on.
Tragic Biography: Resurrecting Henrietta Lacks
This scholarly article is more than my students are willing to work through at ten dense (for them) pages, but we will look at specific paragraphs. Bell Hooks points out, “More often than not when works focused on race and gender are created with no attention given to whether the perspective of the writer is anti-racist or anti-sexist, familiar negative stereotypes are simply reproduced and reinscribed” (83).14 She accuses Skloot of portraying female characters like Henrietta as colorful, loose, a “kind of modern child-like primitive” (84).15 Does she need to write that because Henrietta and Day share a room from the age of four that “what happened next didn’t surprise anyone: they started having children together” (84).16 It begs the question, would the subjects, if they were, say, white or Asian, be given the same treatment of characterization? She also criticizes the details Skloot includes about Joe, his traumatic history and time in jail for murder, again, indulging an over-simple look at him because of his race? Hooks says that the only heartfelt storyline in the book is that of the HeLa cells. Of course, Skloot is a science writer, and we can discuss in class whether or not what standards we hold her to as the narrator of these stories. If problematic, to what extent might she be redeemed by her advocacy and relationships with Deborah, especially?
Thirteen Ways of Looking at Henrietta Lacks
By now we should realize that there are many ways to interpret the fate of Henrietta, her family, and her cells. One of my favorite poems, Wallace Stevens’s Thirteen Ways of Looking at a Blackbird, is the model and apparent inspiration for this article. In contrast to Hooks, Lantos gives kudos to Skloot for her “treatise that is at once a detective novel, an analysis of the conundrums of research ethics, a call for health system reform, and an exploration of racism in America” (228), The piece is formatted as a numbered list of perspectives and questions with poetic headings like “Cry Out Sharply” and “The River is Moving”17. He calls out questions we might have avoided in favor of a simpler reading of an already complex story: to what extent do researchers know the race of the cells used for research anyway? Can we judge the past by the standards of the present? To what extent should we celebrate Henrietta for something she didn’t actually do or have any control over? How much does it matter whether or not the family has not health coverage? “But if researchers had never taken Henrietta’s cells, her children would still lack health insurance” (Lantos 231).18 He also questions the exploitative nature of Skloot’s characterization.
The Way of All Flesh
This documentary from 1997 made by Adam Curtis tells the story of Henrietta and HeLa cells through let another lens—literally. While the emphasis here is on the science, he has interviews with all family members and good friends alive at that time. He also has interviews with the remaining medical and research professionals still alive. The documentary puts the story in the context of Nixon’s war on cancer. As an example of a documentary, it is highly stylized with an unexpected soundtrack, often with science fiction undertones. I’ll show the video to reinforce student knowledge, arouse discussion about different perspectives, and as a good video to analyze craft choices for elements such as music, selected voices, title, and filmmaker’s purpose, to begin.
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