Henrietta Lacks: The Woman Behind the HeLa Legacy
by Elize Villalobos posted on 9/29/2017
Throughout history, there has always been a strange human impulse to reduce people solely to the tangible impact that they have left on the world. A life filled with untold hopes and dreams becomes a mere collection of facts and figures, associated only with the legacy that fortuity has seen fit to ingrain in our collective consciousness. One of the most striking cases of this in modern history is the story of Henrietta Lacks, a woman who neither consented to a procedure from which the fields of cellular biology and technology would be changed, nor lived long enough to know of her profound impact on the world. Perhaps the most insightful encapsulation of the moral essence behind Lacks’ tale is found on a single page before the prologue of the book The Immortal Life of Henrietta Lacks by Rebecca Skloot. There, a quote by Elie Wiesel, a famous survivor of the Holocaust, reads: “We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, its own treasures, with its own sources of anguish, and with some measure of triumph.”[1]
Often known solely by her cell line’s name, HeLa, Lacks was a normal woman who died from an abnormally aggressive cervical cancer. The first human immortal cell line would be cultivated from the cells of her initial tumor, a development that directly and indirectly facilitated enormous strides in medicine and science.[2] However, for far too long, Lacks herself was reduced to nothing more than a clinical subject, either treated as incidental to her cells or else entirely eclipsed by them. Yet, steps towards rectifying that injustice have been made by many devoted journalists and authors, chief among them Skloot, whose book recounts Lacks’ biography and posthumous legacy in great detail, and upon which the recent movie of the same name starring Oprah Winfrey was based. The gains made from her cells have long been acknowledged and celebrated, but it is necessary and right to remember her as the individual she was while alive, not merely as an abstract figure whose untimely demise is but an afterthought to the large-scale, long-term benefits it ultimately provided.
Due to her short life span and the length of time during which the public did not know or care about her existence, it can be difficult to accurately ascribe traits to Henrietta Lacks. However, Skloot’s detailed research provides plenty of material from which an impression of Lacks may be gleaned. From her birth on August 1, 1920 in Roanoke, Virginia as Loretta Pleasant, Lacks led a simple, yet laborious, life.[3] After her mother died in childbirth in 1924, her father sent her to live with her maternal grandfather, Tommy Lacks, in Clover, Virginia, thus separating her from her eight older siblings.[4] However, her cousin David, also known as Day, was raised alongside her, sharing a room and many responsibilities with her.[5] There on her grandfather’s farm, Lacks spent much of her childhood toiling under the sun, taking care of the farm animals, picking crops, and plowing fields.[6]
Apart from to the chores of daily life, Henrietta’s romantic and sexual activity began at quite a young age with Day. Those who had picked up on the particular nature of their closeness were unsurprised when Day and Henrietta had a child, Lawrence, despite her being a mere fourteen years old and Day being five years her senior.[7] Four years later they had another child, Elsie, who was born with epilepsy, neuro-syphilis, deafness, and muteness.[8] Facing little outside pressure to rush into marriage, Lacks and Day eventually wed in April of 1941.[9] Afterwards, motivated by a desire for a better life, the family would move to Turner Station in Maryland, an industrial town mostly consisting of migrant black workers.[10] However, Lacks preferred the fresh air of Clover, and she would always take her children back there on the weekends.[11] She and Day would go on to have three more kids, Sonny, Deborah, and Joe, and together with her family, Lack lived a mostly uneventful, if very occupied, life for some time.[12]
However, four months after giving birth to Joe, Lacks went to Johns Hopkins Hospital, informing the receptionist “that she had a knot on her womb.”[13] As a matter of fact, she had felt a strange sensation that something was wrong with her for around a year, but, loath to enter a hospital setting if at all avoidable, it was only when she started bleeding outside of her menstrual cycle that she decided to consult a doctor.[14] Thus, Lacks went to the “colored ward” of Johns Hopkins, where Dr. Howard Jones diagnosed her with cervical cancer.[15] Not wanting anyone to worry about her, she kept her diagnosis secret from everyone except Day for a month and a half. Her convincing façade was aided by the fact that she did not yet have any symptoms and by the infrequency of the radium treatments that were the standard back then.[16] The initial procedure consisted of inserting tubes filled with radium into the cervix and sewing them into place; during the operation, the doctor, Dr. Lawrence Wharton Jr., removed a piece of the tumor to send to George Gey, the man who would first cultivate and distribute HeLa to others.[17]
Lacks’ secrecy was disrupted when a change to X-Ray treatments necessitated more frequent trips to Johns Hopkins. She decided to entrust news of her diagnosis to her cousins and friends Sadie and Margaret, and the two would let Lacks stay at Margaret’s house after her treatments while she waited for Day to take her home. Life went on in this manner for a while, and at one point, it seemed as if the cancer had almost completely regressed; the doctors were nearly certain that she would make a full recovery.[18] However, a major marring of this temporarily positive outlook was that, in another grave violation of her bodily autonomy, the doctors had failed to inform Henrietta that the treatments would leave her infertile.[19] She insisted that she would not have agreed to them had she known of the consequences.[20]
That concern was soon supplanted by the aggressive recurrence of her cancer. Despite reporting an increase in her discomfort, the doctors found “No evidence of recurrence,” until some weeks later when they found a large mass attached to her pelvic wall. By then, Lacks’ condition had worsened to the point that she had difficulty walking and urinating, and it would only deteriorate further from there.[21] Lacks’ cancer was terrible to an almost unprecedented degree. It spread to essentially every surface inside her body and severely inhibited most of her vital, basic bodily functions.[22] It must not be forgotten that, for all the good that would eventually come of those cancer cells, they caused profound suffering in a fellow human being, a reality that should never be dismissed with casual indifference no matter when, where, or it how it occurs. As her cousin Emmett would later recount, “Henrietta rose up out that bed like she been possessed by the devil of pain itself … That there’s a memory I’ll take to my grave … She was sick like I’ve never seen.”[23] While in this poor state, Lacks suddenly sensed the imminence of her death and told her sister, Gladys: “Make sure Day takes care of them children … Especially my baby girl Deborah.”[24] Less than a month afterwards, Lacks died on October 4, 1951.[25]
Apart from the chronological timeline and facts of her tragically short life, it is the testimony of her friends regarding her personality and people’s perceptions of her that help complete an impression of the person that Lacks actually was. According to Sadie, Lacks, or “Hennie,” as Sadie called her, “made life come alive – bein with her was like bein with fun … Hennie just love peoples. She was a person that could really make the good things come out of you.”[26] In terms of her appearance and self-expression, Lacks was a beautiful young woman, and she carefully maintained a vibrant, feminine look. She mostly wore skirts and pumps that showed her toes, the nails of which she loved to carefully paint a dark red.[27]
It is little surprise that Lacks inspired devotion among men. During her days on her grandfather’s farm, her cousin Crazy Joe Grinnan was so taken with her that he stabbed himself upon learning of her and Day’s engagement.[28] In Turner Station, another of her cousins, Galen, was, according to Sadie, more attracted to Lacks than he was to his wife, Ethel.[29] In turn, Ethel absolutely despised Henrietta; Sadie reasonably assumed that her jealousy was the root of her animus.[30] Lacks and Sadie paid her no mind, though; they would laugh and enjoy each other’s company, playing bingo for pennies as Lacks’ children stayed close to their mother and toyed with the chips.[31] On nights that Day stayed home, he and Lacks would play cards and listen to the blues.[32] However, ever rambunctious seekers of a good time, Lacks and Sadie would creep out of the house to go dancing when Day worked the night shift, lightheartedly making their escape from the dance club if Ethel happened to appear.[33] Lacks simply enjoyed life with the vivacity of the young, free-spirited woman she was.
Coexisting alongside her sense of mischief and playfulness, Lacks was endowed with a maternal affinity for children; they would always behave for her whenever she was present. However, her un-abiding love for her own children did not always manifest itself through leniency. When Lawrence would play around a dangerous pier against her wishes, she wouldn’t hesitate to use fierce corporal punishment. As Sadie recalls, “Hennie went down there with a switch. She pitched a boogie like I never seen.”[34] However, apart from Lawrence’s disobedience, Lacks almost never got angry.
If motherly concern was the primary cause of emotional turmoil in her life, it is unsurprising that Lacks’ greatest heartbreak was having to send Elsie away to Crownsville State Hospital, then called Hospital for the Negro Insane, when she became pregnant with Joe.[35] Henrietta simply did not have the time or means to take care of Elsie and her special needs as other unavoidable responsibilities began to pile up.[36] However, by all accounts, “a bit of Henrietta died the day they sent Elsie away … losing her was worse than anything else that happened to her.”[37] Still, Lacks made an effort to remain in her daughter’s life, and she would make the trip to Crownsville to visit and comfort Elsie once a week.[38]
Despite being a real person imbued with great depth of character, Henrietta Lacks’ legacy would long be obscured and overshadowed by HeLa. Although exceedingly well-covered by scientific journals, the cell line’s significance still deserves to be mentioned. Because HeLa’s cells could survive indefinitely in a cell culture, they were able to be widely disseminated to scientists around the globe which facilitated and promoted an incredible range of experimentation that had previously not been possible.[39] As Skloot succinctly explains, “The reason Henrietta’s cells were so precious was because they allowed scientists to perform experiments that would have been impossible with a living human.”[40]
Scientific knowledge and medical applications thereof benefited immensely from this cellular proliferation. Among the most important contributions and advancements that were made with HeLa cells were the discovery of how to clone and freeze cells, the discovery of chromosomes, and the overall standardization of the field of cellular biology.[41] In medicine, HeLa cells were instrumental in developing a polio vaccine, and, in a poetic turn, an HPV vaccine in the 1980s.[42] Unsurprisingly, an immense business revolving around the sale of HeLa boomed; there was intense demand, and with a supply that could be indefinitely replenished, there was a great deal of money to be gained.[43]
Yet, in terms of its ethical underpinnings, Lacks’ legacy is much more complex and ambiguous than HeLa’s almost entirely beneficial impact on science and medicine. Any total condemnation or absolution of the outside parties who stitched together the HeLa legacy can be met with a counterpoint that muddles the boundary between right and wrong. As Deborah said herself at one point, “There’s two sides to the story and that’s what we want to bring out. Nothing about my mother is truth if it’s about wantin to fry the researchers.”[44] As difficult may be to accept, Deborah was right. After all, the strange conundrum at the heart of HeLa’s story is that nothing illegal was done. Lacks was not technically deprived of her rights since doctors were not legally bound to request her permission to obtain a tissue sample, and at the time it was common practice to obtain cells without asking for consent.[45] Furthermore, because Lack’s biological tissue was not illegally obtained, and because there are still no actual laws requiring doctors to inform patients of any potential commercial benefit that their tissues may hold, any profits made from HeLa are essentially unobtainable to the Lacks family on a legal basis.[46]
Regardless of the legal technicalities, there is an undeniable sense of wrongness that pervades the narrative of HeLa, and it is impossible to not acknowledge the intersectional racial and gendered implications of the story; many perceive the events as yet another instance of “a black woman whose body … was exploited by white scientists.”[47]While an entirely fair interpretation, it must also be acknowledged that the outcome would not necessarily have been altered had Lacks been white, as this particular controversy arguably revolves mostly around lack of informed consent and around the scientific ethics through which researchers and doctors approached most, if not all, patients and subjects.
Conversely, one cannot divorce the specifics of a case from the world and cultural mores in which it takes place and which inherently inform it. Most doctors, scientists, and academics of that time were white men, and their professional principles allowed them to utilize and benefit from marginalized and disenfranchised communities, thus making people of color and/or women especially vulnerable to their malpractices. The historical record has ample evidence of this, and the racially tinged and motivated wrongs done to black people in the name of science simply cannot be blotted out. The dehumanization and reduction of black people to experimental specimens has happened often enough that it would be naïve, or willfully ignorant, to not recognize as yet another manifestation of institutionalized racism.
To support this argument, one need only look at figures such as J. Marion Sims, dubbedthe “Father of Modern Gynecology,” who used slave women and children to test out different types of surgery, such as a corrective procedure for fistula.[48] In his process of medical experimentation, he subjected the individual slaves to horrific, invasive brutality.[49] Fast forwarding to the 1900s, black people continued to be systematically abused in science. Around the same time that HeLa cells were being used to help develop a polio vaccine, the notorious Tuskegee syphilis studies were taking place; during the studies, researchers “watched African-American men with syphilis … die slow, painful, preventable deaths, even after they realized penicillin could cure them.”[50] Additionally, there were many instances in which doctors performed involuntary, medically unnecessary hysterectomies on black women in order to “stop them from reproducing, and to give young doctors a chance to practice the procedure.”[51]
More relevant to the Lacks family was Johns Hopkins’ history of extremely questionable activities. Despite offering free medical treatment for people of all colors, the hospital had also performed studies on black people without informing them, such as taking blood from children to search for “genetic predispositions to criminal behavior.”[52] Perhaps the overall attitude at that time of the scientific community towards black patients and people is best exemplified through a quote by the doctor who diagnosed Lacks: “Hopkins, with its large indigent black population, had no dearth of clinical material.”[53] With all of this in mind, it is exceedingly evident that the larger racial context is inextricable from HeLa’s story and vice versa. However, whatever one may take away from the HeLa controversy in terms of ethics and race, the personal pain of the Lacks family is indisputable. Indeed, one of the more obvious narrative threads in Skloot’s account is the deep emotional distress that Lacks’ family underwent. In her absence, her children suffered severe abuse at the hands of Ethel. Additionally, when they eventually learned of the HeLa cell line twenty-four years after their mother’s death, they struggled greatly with its financial and philosophical implications, only getting something approaching closure with the writing and release of Skoot’s book.[54]
Many people will draw different conclusions from Henrietta Lacks’ story. However, regardless of one’s particular opinions, it would be impossible for anyone with an open heart and mind to not come away from Skloot’s book thinking of the HeLa story in an entirely new light. One should recognize Henrietta Lacks as immeasurably more than just a biological subject from which immortal cells, seemingly entities unto themselves, were drawn. Although some cynics may say that finding the human reality behind historical and scientific figures and events is meaningless, the personal feelings, encounters, and connections that are made are all that life really is as we ourselves live through it. Understanding the people behind any given story is necessary for our self-improvement as individuals and as a society. If we all contain universes within ourselves as Wiesel said, the knowledge and lessons contained therein are surely enough make the world outside just a little bit better. That may certainly be said of Henrietta Lacks and her remarkable story.
Elize Villalobos is a freshman at the University of North Georgia. Although her major is still technically undeclared, it is increasingly likely that she will major in English. She has always loved reading and writing, and she sees both as powerful means to understanding the world and further developing empathy with other people. After she graduates, she would like to pursue a career that allows her to make as positive an impact on the world and people’s lives as she, a somewhat negative person, is able. Her hobbies include listening to music, reading, watching movies, sitting motionless while lost in thought, debating philosophy and morality with herself, and generally trying to get her life in order. Unaccustomed to taking selfies and unable to tame her hair, write succinctly, or go without a moment of self-deprecation, Elize would like to apologize for the mediocre quality of her profile picture as well as this mini biography’s length.
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[1] Skloot, Rebecca. The Immortal Life of Henrietta Lacks. New York: Gale Group, 2010.
[2] Ibid., 4. [3] Ibid., 18. [4] Ibid. [5] Ibid., 19, 23. [6] Ibid., 19. [7] Ibid., 23. [8] Ibid. [9] Ibid., 24. [10] Ibid., 26. [11] Ibid., 42. [12] Ibid., 331. [13] Ibid., 13. [14] Ibid., 14. [15] Ibid., 31. [16] Ibid., 32, 45. [17] Ibid., 41. [18] Ibid., 46. [19] Ibid., 47. [20] Ibid., 47, 48. [21] Ibid., 64. [22] Ibid., 65, 83. [23] Ibid., 85. [24] Ibid., 85, 86. [25] Ibid., 86. [26] Ibid., 43. [27] Ibid. |
[28] Ibid., 24.
[29] Ibid., 43. [30] Ibid. [31] Ibid., 44. [32] Ibid., 42. [33] Ibid., 44. [34] Ibid., 45. [35] Ibid. [36] Ibid., 47. [37] Ibid., 45. [38] Ibid. [39] Ibid., 57, 58. [40] Ibid., 58. [41] Ibid., 98, 99, 100. [42] Ibid., 212, 213. [43] Ibid., 101. [44] Ibid., 250. [45] Ibid., 29, 328. [46] Ibid., 326, 327. [47] Ibid., 168. [48] Holland, Brynn. “The ‘Father of Modern Gynecology’ Performed Shocking Experiments on Slaves.” History. 29 Aug. 2017. Web. 31 August 2017. [49] Ibid. [50] Skloot, 50, 97. [51] Ibid., 50. [52] Ibid., 167. [53] Ibid., 30. [54] Ibid., 191. Image: Henrietta Lacks. Photo by OI a.urabain. Retrieved from Wikimedia Commons. |
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