The Immortal Life of Henrietta Lacks Summary

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Here you will find a The Immortal Life of Henrietta Lacks summary (Rebecca Skloot's book).
We begin with a summary of the entire book, and then you can read each individual chapter's summary by visiting the links on the "Chapters" section.

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Last Updated: Monday 1 Jan, 2024

The Immortal Life of Henrietta Lacks Summary Overview

In 1951, a woman of African American descent, Henrietta Lacks, found herself diagnosed with an aggressive form of cervical cancer. The chief gynecologist at Johns Hopkins Hospital, keen on studying this disease, had reached out to George Gey, the leader of tissue culture at the hospital, with a request for both healthy and cancerous cell tissue cultures. As part of this, Henrietta's tissue samples were taken. Henrietta's cancer cells labeled HeLa, surprisingly, survived against all odds in the laboratory. While Henrietta battled her disease and eventually passed away, leaving behind her family, her cells continued to live, unbeknownst to her family. It was only in 1973, when a family friend who happened to be a researcher mentioned his work with HeLa cells, that her family found out that part of Henrietta was still alive. George Gey's cultivation of HeLa cells paved the way for revolutionary research on diseases and genetics, and the development of new medical treatments and vaccines. Gey generously shared HeLa cell samples with any researcher who needed them. Eventually, for-profit labs began to mass-produce HeLa cells to cater to the research demands. However, due to their rapid growth, HeLa cells could contaminate other cell cultures. This led to geneticists devising ways to identify genetic markers within HeLa cells to distinguish them from the rest. Amidst all this, Henrietta's children were asked for blood samples, without adequate explanation, leading Henrietta's daughter Deborah to believe she was being screened for cancer. The story of the "immortal" cell culture and the unknown woman behind it started making waves in media, leading to a mix-up with Henrietta's name, which was widely reported as Helen Lane. The truth was eventually uncovered by Michael Rogers, a journalist from Rolling Stone, who contacted the Lacks family. The family was shocked to learn that Henrietta's cells were being profited from by others, which sparked memories of unethical practices by white doctors on black patients. The family continued to be approached by journalists, which included a BBC documentary team in 1996, and had an unfortunate encounter with a conman posing as a lawyer. Henrietta's daughter Deborah hoped that the documentary would shed light on her mother's story and also help her understand her mother better. The family's journey took many more twists and turns, culminating in a visit to the lab at Johns Hopkins where Henrietta's cells were kept, and the shocking revelation about the abuse suffered by Henrietta's other daughter, Elsie, at a mental institution. Despite the emotional toll, Deborah remained determined to learn and understand more about her mother's life and her contribution to science.

chapter 1

Henrietta, in 1951, discovered a lump on her cervix and sought medical help at Johns Hopkins Hospital, the nearest facility that offered medical treatment to African Americans, despite it being twenty miles away from her residence. Her discovery followed the birth of her fourth and fifth children, Deborah and Joe, respectively. Due to uncharacteristic bleeding, she had been referred to a gynecologist at the hospital. The examining gynecologist, Howard Jones, identified a small, purple growth on her cervix. Upon reviewing her medical history, Jones spotted several health issues that Henrietta had neglected. The discovery of the rapidly growing lump was surprising considering there was no such indication when she recently gave birth at the same hospital.

chapter 2

Born as Loretta Pleasant, Henrietta was the ninth child of Johnny and Eliza Lacks Pleasant. Upon Eliza's death after her tenth childbirth, Henrietta and her siblings moved to Clover, Virginia to live with their grandfather, Tommy Lacks. The children were split between different relatives. Tommy, a tobacco farmer, lived on the same land once worked on by his enslaved forebears. Tommy also cared for his other grandchild, David “Day” Lacks. Day and Henrietta, who would eventually become husband and wife, grew up together on the farm. Alongside other Lacks children, they assisted Tommy in bringing the tobacco to market. Henrietta and Day shared a bedroom from a very young age. Henrietta had their first child, Lawrence, at fourteen and their second child, a mentally disabled daughter named Elsie, at eighteen. They married in 1941, two years after Elsie's birth. Their cousin, Fred Garrett, returned to Clover in 1941 from Turner Station, Maryland. He had been employed at Bethlehem Steel’s Sparrows Point mill, which saw increased business during World War II. Turner Station had developed a small black worker community, situated roughly twenty miles from Baltimore. Initially, Day intended to work at the mill and bring his family over once he had amassed enough money. However, after Fred was conscripted into the war, he sent his earnings to Henrietta, allowing her and the children to join Day in Turner Station.

chapter 3

Henrietta Lacks's biopsy indicated cervical cancer. Richard TeLinde, Jones's superior and a gynecologist, was conducting a study on this type of cancer. He regularly performed experiments on public ward patients, primarily African-American, without their knowledge because they weren't paying the full amount at Hopkins. During Henrietta's biopsy, TeLinde aimed to confirm that two types of cervical cancers were identical by comparing them with healthy cervical tissue. George Gey, the tissue culture chief at Hopkins, was collaborating with TeLinde. Gey and his wife Margaret were striving to cultivate a line of human cells that could perpetually divide and regenerate, termed "immortal". Upon discovering her cancer diagnosis, Henrietta chose to keep it a secret to not distress her family. She informed Day that she needed to revisit Hopkins for medication. Before the commencement of her treatment, Henrietta signed a consent form for any necessary operation under anesthesia as per doctor's discretion. Following day, she received a radium treatment that involved stitching radium tubes into her cervix. While in anesthesia, a surgeon extracted both healthy and tumor cervical tissue samples to hand over to Gey. Henrietta was kept oblivious about the tissue samples.

chapter 4

Mary Kubicek, an aide to Gey, handled the creation of cell cultures and tagged them as HeLa, representing "Henrietta Lacks." Henrietta, on the other hand, seemed to be recovering successfully post her radium therapy. Upon removal of the radium tubes two days later, her physicians released her, scheduling another therapy session in two and a half weeks. Mary observed a significant development in Henrietta's cancerous cell culture around two days post her release. Not only did the cells survive, they multiplied at an unexpectedly fast pace. George informed his team that he might have cultivated the first-ever "immortal" human cells. When his team members requested samples, he consented to distribute them.

chapter 5

Soon after her return, Henrietta resumed her normal life, spending time in Clover, cooking for her kin, and dancing with her cousin Sadie while Day worked night shifts. Sadie revealed to Skloot that Henrietta was popular and loved by all, except for Ethel, Galen's wife. Henrietta's daughter Elise demanded special attention. Henrietta's ability to care for Elise was affected when she got pregnant with Joe. Physicians suggested institutionalizing Elise, resulting in Elise being moved to Crownsville State Hospital. Henrietta visited her there weekly. Post her second radium session, Henrietta had to begin X-Ray therapy, requiring daily visits to Hopkins. She stayed at her cousin Margaret's place near Hopkins and waited for Day to pick her up post his night duty. She reassured Margaret and Sadie that her sickness had cured. During this period, Henrietta discovered that infertility was a side effect of her treatment, leaving her shocked. Jones and TeLinde claimed that they informed all their patients about this side effect, but Henrietta denied any such information and expressed her disapproval of the treatments. Her problems worsened when she contracted gonorrhea, presumably from Day, which combined with the radiation therapy side effects. Her journey to Margaret's house became increasingly challenging, forcing her to use taxis. Gradually, her radiation therapy led to severe burns on almost her entire abdomen.

chapter 6

In 1999, Skloot reached out to Roland Pattillo, a gynaecology professor and organizer of the HeLa Cancer Control Symposium at Morehouse School of Medicine, for help with her study. Pattillo informed her about the distress the Lacks family had experienced due to the publicity of the HeLa cells, and how Deborah, Henrietta's daughter, almost died from a stress-induced stroke. Before he shared the Lacks family's contacts, he tested Skloot's knowledge of white scientists' unethical use of black Americans in experiments. He cited the Tuskegee syphilis experiment as an example, where black men were allowed to die from a preventable disease for research purposes. Finally, Pattillo provided Deborah's phone number, urging Skloot to be understanding. Upon contacting Deborah, Skloot was taken aback by Deborah's interest in the book project. Skloot expressed her intent to shed light on Henrietta's life because there was little known beyond her cells. Deborah confessed her desire to comprehend her mother's life and her contribution to science. She requested Skloot to contact her again despite advising her the following day to write her own book under her brothers' suggestion. She handed Skloot the contact details of her father, her brother Lawrence, and her other brother David “Sonny” Jr. Skloot's attempts to reach the men were futile. When she finally contacted Day, he abruptly ended the call.

chapter 7

George Gey, on a Baltimore TV show in April 1951, unveiled his ambition of curing cancer with the help of HeLa cells he had successfully cultured and was distributing to interested researchers. These cells were a game-changer as they allowed scientists to carry out experiments impossible on humans. Despite their scientific significance, HeLa cells remained absent from popular culture. This could be attributed to the public mistrust of cell culturing, linked to Alexis Carrel, a Nobel laureate and eugenicist. Carrel claimed the creation of immortal chicken heart cells in 1912, a feat steeped in sensationalism and fear, propagated by the media and Carrel himself. The claim turned out to be false as other scientists couldn't duplicate the experiment, and Carrel's demise took place while he faced charges for Nazi collaboration.

chapter 8

Henrietta, in June 1951, suspected her cancer was back but her doctors disagreed. The period's prevailing medical practice, "benevolent deception", often kept patients in the dark to prevent distress. Whether Henrietta would have received different care if she were white is uncertain to Skloot. Henrietta, like many other black patients, could have been diagnosed later and given fewer pain medications. Howard Jones maintains that he provided her the usual treatment of those times. Not long after being declared healthy, Henrietta experienced severe pain and an untreatable tumor on her pelvic wall was found. Her doctors began radiation therapy to alleviate her suffering, leading her family to think she was still being cured. When she was unable to walk, Henrietta was admitted into the hospital. Another cell sample was taken for Gey's research, but her blood toxins hindered the cells' survival. Her husband and kids visited daily until the hospital staff requested they cease due to Henrietta's emotional pain upon their departures. There's no evidence that George Gey visited Henrietta in the hospital or informed her about her cells. A colleague, however, asserts that Gey did visit and told Henrietta her cells would benefit others.

chapter 9

Sonny, a member of the Lacks family, left Skloot waiting at their agreed meeting point in Turner Station. Skloot, while at the hotel, spent her time reading a 1975 Rolling Stone article about the Lacks family. The story was done by Michael Rogers, who had stayed in the same hotel and attempted to connect with the Lackses through the White Pages, just as she had unsuccessfully done. Her next plan was to reach out to Courtney Speed, a local who owned a grocery store and was setting up a museum honoring Henrietta, but she got lost navigating Turner Station. Her presence, being one of the few white people there, garnered many inquisitive looks. After finding the church where discussions related to the planned museum had been held, the local minister escorted Skloot to Speed's Grocery to converse with Speed. However, Speed would not discuss Henrietta without the family's consent. She mentioned that the museum's development had stalled due to a complication involving someone named Cofield. In a helpful move, Speed gave Skloot a VHS tape containing a BBC documentary titled “The Way of All Flesh.” This documentary featured talks with Henrietta’s relatives from Clover, leading Skloot to believe she should search for the Lacks family in Clover.

chapter 10

By 1999, Clover had become a ghost town, its businesses out of operation. The stark difference between the well-maintained houses of Clover and the run-down, weed-infested Lacks Town where Henrietta's family lived was highly noticeable. During her visit, Skloot unexpectedly encountered Henrietta's cousin, Hector Henry, who went by Cootie. Cootie, who was illiterate, had a Rolling Stone article about Henrietta but couldn't read it. Skloot clarified that the article didn't delve into Henrietta's personality. Cootie painted an image of Henrietta as kind and loving. He shared a bizarre fact he'd heard, that the weight of all of Henrietta's cells would now be around eight hundred pounds, which he found peculiar given Henrietta's petite size. He was convinced Henrietta's unusual cancer was the result of voodoo or medical malpractice.

chapter 11

During September 1951, Henrietta's body was consumed by tumors. Her kidneys were struggling to eliminate the toxins in her bloodstream, leading to a necessity for regular blood transfusions. Her cousin Emmett, along with his friends, volunteered to donate their blood, given that Henrietta had frequently looked after them. She was experiencing severe agony. She asked her sister Gladys to ensure that Day would look after their kids, paying special attention to Deborah. Her life concluded on October 4, 1951.

chapter 12

Upon learning of Henrietta's demise, Gey sought permission to perform an autopsy to obtain cells from her remaining organs. At the time, while live patients didn't need to consent for tissue samples, the dead required familial approval. Initially, Day declined the request from Hopkins, but after a second appeal during his visit to see Henrietta's body, coupled with assurances that the tests could potentially help their children and his cousin's encouragement, he agreed. Kubicek was involved in the process of culturing the cell samples. In conversation with Skloot, she recalled noticing Henrietta’s painted toenails, which made her realize the cells they were dealing with originated from a real person. Henrietta's body was shipped back to Clover for the funeral. The sight of Henrietta's chipped toenail polish moved Sadie to tears as it symbolized the immense pain Henrietta had endured - a healthy Henrietta would never have tolerated such unkempt nails. A huge storm erupted during Henrietta's interment, causing significant damage including the destruction of a cabin in Lacks Town and the death of a family member. Henrietta’s relative, Peter, interpreted the storm as an expression of Henrietta's wrath.

chapter 13

In the late 1951, a severe polio outbreak was affecting the globe. A potential vaccine had been formulated by Dr. Jonas Salk at the University of Pittsburgh, but it needed testing for safety reasons. The National Foundation for Infantile Paralysis (NFIP) planned a clinical trial. However, the checks required monkey cells which were too expensive. The NFIP approached George Gey for his cell cultures as an alternative. In the next year, Gey and a peer confirmed that HeLa cells could be infected with poliovirus. Once Gey established a method to transport large volumes of HeLa cells via mail, the NFIP aimed to manufacture these cells on a big scale for their studies. The Tuskegee Institute was proposed by Charles Bynum, NFIP's director of black activities, as a potential site for HeLa cell production to aid black scientists. These cells validated the efficacy of Salk's vaccine. Despite being cancerous, HeLa cells were used in a wide range of studies by the Tuskegee lab as they behaved similarly to normal cells. These cells were utilised to examine viruses, standardise tissue culture protocols, freeze cells without damage, and even clone single cells. HeLa cells also led to significant genetic advances, such as the revelation that human cells contain forty-six chromosomes. However, the demand for HeLa cells outstripped the Tuskegee lab's supply capabilities. Seeing a business potential, Samuel Reader, head of Microbiological Associates, and his associate, researcher Monroe Vincent, launched the first profit-making, large-scale cell distribution facility. They began supplying to major labs like the NIH. The success of companies like Microbiological Associates led to the closure of the Tuskegee lab. George Gey was irritated by the excessive focus on HeLa. His wife Margaret and Mary had to persuade him to write an abstract on cultivating HeLa, and Margaret ended up submitting it. She frequently wrote and submitted her husband's research thereafter. Although questioned by friends about not claiming ownership of HeLa research before allowing it to become "general scientific property", Gey had no interest in financial gain from his work.

chapter 14

The Minneapolis Star wrongly identified the original donor of the HeLa cells as Henrietta Lakes in an article published on November 2, 1953. The source of the error remains unknown. NFIP's press officer, Roland Berg, expressed interest in the HeLa story but Gey and TeLinde, believing in protecting Henrietta's privacy, prohibited him from using her real name, suggesting a pseudonym instead. However, Berg didn't proceed with the story. Colliers magazine also planned to write a similar piece. Gey gave his consent only on the grounds that he could review and alter it before it went to print, and that all personal information about Henrietta be excluded. The magazine went on to publish the piece on May 14, 1954, perpetuating two inaccuracies. It referred to Henrietta as Helen L. and wrongly stated that Gey obtained the HeLa sample posthumously. The origin of these inaccuracies remains a mystery, although some of Gey's peers think he intentionally provided a false name to ensure Henrietta's privacy.

chapter 15

Following Henrietta's passing, her eldest son Lawrence left school to care for his siblings, eventually being conscripted into the military for two years. The younger Lacks children were kept in the dark about their mother's fate, and were discouraged from asking questions. Ethel and her husband Galen moved into Day's home, where she fed the children sparingly and forced them to maintain the house. Joe bore the brunt of Ethel's harshness, enduring regular beatings. Upon Lawrence's return, he and his girlfriend, Bobette, discovered the mistreatment. Bobette pushed for the children to live with them. At the same time, Galen started molesting Deborah. Bobette learned of this inadvertently, but she shielded Deborah and encouraged her to stay in school. Despite this, Deborah considered marrying her neighbor, Cheetah, hoping that a husband would deter Galen. She also thought about leaving school due to her hearing issues, a problem her teachers were unaware of because she had been taught never to contradict adults. Bobette suggested she sit closer to the front in class. For most of her life, Deborah was ignorant of Elsie, who passed away shortly after Henrietta. When Day finally told her that Elsie had been deaf, Deborah was distressed that nobody had attempted to teach her sister sign language.

chapter 16

Cootie directed Skloot to Cliff, Henrietta's relative who she grew up with, and Cliff led her to the Lacks family burial site. The cemetery held both white and black Lacks family members, and many graves were unmarked due to the family's financial constraints. While Cliff identified the resting place of Henrietta's mother, Henrietta's grave remained unidentified. Albert Lacks, Henrietta's white great-grandfather on her mother's side, had split his property among his three sons. Upon his son Albert Jr.'s death, the land was inherited by his black descendants. However, Albert Jr.'s brother Benjamin took legal action to reclaim some of the property, and the court granted him half. Benjamin then distributed his section of the land among his seven black children sixteen years later. When Skloot met with the eldest white Lacks family members in Clover, their home was adorned with the Confederate flag. They denied any familial connection to their black counterparts, claiming that former slaves just adopted the surnames of their owners. However, Henrietta's sister Gladys disputed this. Gladys shared the story of their sister Lillian who had a very light complexion and could pass for Puerto Rican. Lillian relocated to New York, married a man from Puerto Rico, and severed ties with her family.

chapter 17

During the 50s, Chester Southam, a virologist, feared that HeLa cells might transmit cancer to researchers handling them. To investigate this, he covertly injected HeLa cells into cancer patients' arms, saying it was an immunity test. The outcomes were alarming as tumors developed on patients' arms and even metastasized to the lymph nodes in one case. In an attempt to observe the impact of HeLa cells on healthy individuals, Southam sought volunteers from Ohio State Penitentiary. Predictably, tumors emerged on these volunteers' arms too. However, the healthy patients appeared to fend off the cancer cells, making Southam optimistic about finding a cancer vaccine. Southam didn’t think it was necessary to disclose to the patients that he was injecting them with cancer cells, thinking it would incite unwarranted panic. In 1963, he made plans to run similar trials at the Jewish Chronic Disease Hospital in Brooklyn. But three Jewish doctors refused to participate, likening the experiment to the horrendous medical trials conducted by Nazis during World War II. The comparison was made to the Nuremberg Code, an ethical guide for human experimentation established after the trial of Nazi doctors, despite many American doctors claiming ignorance of its existence. When Emmanuel Mandel, the head of medicine at the hospital, instructed a junior doctor to administer the injections, the trio of doctors quit, publicizing their resignation letter. A lawyer from the hospital’s board took up their cause and sued the institution. The New York State Attorney General recommended stripping Southam and Mandel of their licenses. Though some doctors defended them, the Board of Regents urged for clearer ethical rules in research. The controversy led to a one-year probation for Southam and Mandel. Following this, the NIH mandated that any experiments involving human subjects must be vetted by a review board to be eligible for funding.

chapter 18

Throughout the 1960s, HeLa cells were a staple in scientific research, even being sent into space by both Russian and American scientists to assess the impact of space travel on human cells. Researchers observed a common pattern in cultured cells - they either died or transitioned into cancerous cells. This sparked curiosity about the exact point a healthy cell turns cancerous. All varying types of malignant cell cultures began producing identical enzymes, leading scientist Lewis Coriell to suspect possible HeLa contamination. In response to these observations, Coriell and his peers suggested the establishment of a cell library by the NIH. As a result, the NIH set up a Cell Culture Collection Committee, which led to the creation of a nonprofit cell bank for uncontaminated cultures at the American Type Culture Collection (ATCC). Meanwhile, French scientists found a way to combine the genetic material from somatic cells, which are neither sperm nor egg cells. In the UK, researchers managed to fuse mouse cells with HeLa cells, creating a cell containing both mouse and human DNA. This hybrid cell paved the way for significant advancements in human genome research and organ transplants. However, the media misreported these developments, leading to a public outcry over the perceived creation of human-mouse hybrids.

chapter 19

At sixteen, Deborah found herself pregnant and was sent to a school specifically for expecting teens by Bobette. She gave birth to Alfred “Cheetah” Jr. in 1966. With Bobette's assistance, Deborah managed to finish high school. Meanwhile, Lawrence operated a convenience store and Sonny joined the military. Joe's life on the other hand was fraught with emotional turmoil. He quit school in seventh grade and enlisted in the military at eighteen. However, his hot temper often led to solitary confinement and he was discharged shortly thereafter. Back home, an incident with a local man, Elridge Lee Ivy, escalated into a violent confrontation, with Ivy assaulting Joe over a girl. In retaliation, Joe killed Ivy with a knife from Deborah’s kitchen. He later turned himself in. Despite confessing to the murder, the court considered Joe's mental health and he was given a lenient sentence of fifteen years. Joe initially created issues in prison but found a semblance of peace in the form of Islam, which led him to change his name to Zakariyya Bari Abdul Rahman and become less violent. Deborah, on the other hand, faced her own domestic issues. She married Cheetah, who turned out to be physically abusive. Following a particularly brutal episode, she left him outside after pushing him down the stairs. When Cheetah survived the night, she confessed to Bobette that she had intended to kill him. Bobette advised against it, and assisted Deborah in leaving Cheetah while he was at work.

chapter 20

In 1966, Stanley Garter, a geneticist, stirred a conference by revealing that the bulk of human cell cultures were tainted with HeLa. He found that a distinct genetic marker, mostly found in Black Americans, was present in eighteen prevalent human cell cultures. As the samples hadn't all come from Black Americans, and Garter was aware that HeLa was from a Black woman, he concluded that all samples were contaminated with HeLa. Most alarmingly, at least six contaminated samples had originated from the ATCC. This finding invalidated many research projects, as it revealed that scientists had been testing the wrong cell types. It also suggested that cells didn't just become cancerous on their own; HeLa cells had, in fact, overwhelmed the samples.

chapter 21

In 2000, Sonny introduced Skloot to his brother Lawrence, who had memories of their mother Henrietta. Lawrence mentioned how he had suppressed his teenage memories and was curious about the scientific significance of Henrietta's cells. On the same day, Sonny brought their father Day home. Despite suffering from gangrene, Day was vehemently against amputation out of fear of his cells being harvested like Henrietta's. He accused Hopkins of being the cause of Henrietta's death and expressed frustration over being misled about the purpose of Henrietta's autopsy. Their sister-in-law Bobette chimed in, revealing a notorious reputation of Hopkins for exploiting black people in their research. The legend of "night doctors" kidnapping black people for research dates back to the nineteenth century, influenced by ghost stories used by white plantation owners to frighten their slaves. Indeed, there were instances of white doctors conducting horrific experiments on slaves without anesthesia. Moreover, northern medical schools incentivised grave robbing of black people's graves for research. Such practices led to a widespread belief amongst the black community that Hopkins intentionally located itself in a poor black neighborhood for easy access to research subjects. Despite the hospital's founder, Johns Hopkins, stipulating that the hospital should provide care for those unable to afford it, with special attention to black children, the hospital had a history of racial bias. Notably, in 1963, the hospital collected blood from seven thousand black children without consent, aiming to prove a genetic predilection to criminality. Sonny expressed disappointment that the family wasn't informed about the HeLa cells, and questioned if there were ulterior motives. Lawrence lamented about the family's struggle to afford healthcare while Hopkins profited from Henrietta's cells. Bobette debunked a common myth, asserting that the cells were not donated by Henrietta, but rather harvested without consent.

chapter 22

Gey was diagnosed with pancreatic cancer in 1970, with the disease spreading too far to allow for a sample to be taken during his emergency tumor removal operation. Before passing away later that year, he informed Kubicek that it was time to unveil Henrietta's identity. Jones was tasked with penning a tribute to Gey and in the process unearthed inaccuracies regarding Henrietta's tumor type in her medical records. However, such misdiagnoses were common at that time and the treatment for both types of cancer was the same. The article written by Jones was the first to include Henrietta's actual name, but as it appeared in a niche publication, it didn't reach many people. In the same period, President Nixon called for a swift cure for cancer, within five years. However, most cell cultures used for research were found to be tainted with HeLa. After a Russian experiment was compromised by American cells, the issue of HeLa contamination was revealed to the public. This sparked curiosity about the origin of HeLa. A Nature magazine piece in 1973 demanded the disclosure of HeLa's true identity in recognition of her scientific contribution. A correspondence between Howard Jones and the author led to a subsequent article which divulged Henrietta's name.

chapter 23

In 1973, a scientist friend told Bobette about the existence of Henrietta's cells. This news made her fear that Hopkins might start targeting Henrietta's descendants. At the same time, researchers started addressing the issue of HeLa contamination. Victor McKusick, a coworker of Jones, suggested mapping Henrietta's DNA using her family's DNA samples. Susan Hsu, a post-doctoral scholar under McKusick, was tasked with collecting blood samples from the Lacks family. However, due to language barriers, Hsu struggled to explain the purpose of the blood collection to the scientifically uneducated Lacks family. The family, led by Day who was raised not to question medical professionals, assumed they were being tested for cancer. At that time, no consent was needed to extract blood for genetic mapping. Deborah, Henrietta's daughter, was greatly disturbed by the blood test. She was afraid that the doctors were testing her for the same cancer that took her mother's life at a young age. After learning about the Tuskegee Syphilis experiments, she feared that she had been injected with her mother's cancer cells. When she asked Day about Henrietta's disease and learned that Henrietta fell ill only after treatment started, Deborah's fears intensified. When asked by McKusick for another blood sample, she sought more information. McKusick explained the significant scientific contributions of HeLa cells, which only heightened Deborah's fear that her mother's cells were suffering from the experiments. McKusick gave her a signed copy of his medical textbook which included a photo of Henrietta, a possession that no one in the family knew how it was acquired. Deborah, however, could not comprehend the contents of the book. Susan Hsu later confessed to Skloot that she was unaware of the confusion within the Lacks family regarding the purpose of the blood tests.

chapter 24

Michael Rogers, the journalist from Rolling Stone introduced in chapter 9, located Lawrence Lacks’ residence in 1975 via the directory. He later confessed to Skloot that he realized the Lacks family hadn't fully comprehended the situation surrounding Henrietta's cells. Initially, Sonny and Lawrence showed no outrage regarding the cells. However, their anger surfaced when they discovered from Roger's article that Henrietta's cells were being sold for profit, assuming George Gey and Hopkins had become wealthy from their mother's cells. Contrarily, no proof could be found that Gey or Hopkins profited from HeLa cells. While it is true that various biotech firms and for-profit cell repositories gained financially from HeLa, some nonprofit cell banks also sold the line. Meanwhile, Deborah attempted to go through the academic book McKusick gifted her. Each revelation of new HeLa research stirred anxiety within her. She was also incensed at the continued misidentification of her mother as Helen Lane, not Henrietta Lacks. The article by Rogers stirred significant public interest and debate since it was the first mainstream media outlet to disclose that the woman linked to HeLa was African-American. The racial element sparked further conversation in relation to the Tuskegee Syphilis trials and the manner in which scientists described HeLa infiltrating other cell cultures.

chapter 25

In the mid-1970s, John Moore received treatment for a rare form of leukemia. In this process, his doctor, David Golde from UCLA, took out his spleen. Moore would return to the university for check-ups every few months. He later discovered that the consent form he had signed gave UCLA the right to any cell line they got from him. Once his lawyer got involved, they found out Golde had profited from selling Moore's cell line which was worth a fortune. Around the same time, Ted Slavin learned his cells were of value to researchers due to their high concentration of Hepatitis B antibodies. Using this knowledge, he made a business decision to sell his antibodies by establishing a company called Essential Biologicals. This company catered to people who wanted to earn from their own cells. Unlike Slavin, Moore didn't have the choice to monetize his cells as Golde had already patented them. Consequently, in 1984, Moore took Golde and UCLA to court for ownership of his cells. Despite the initial dismissal of his case, Moore appealed. The California Supreme Court eventually ruled that cells no longer belong to the individual once they leave the body. However, they also felt Golde had failed in obtaining proper consent from Moore and recommended new regulations for consent. The court voiced concerns that handing over control to patients could potentially hamper scientific research by reducing incentives for researchers and limiting access to essential raw materials.

chapter 26

Deborah Lacks saw her thirtieth birthday without a cancer diagnosis. She wed James Pullum, a future preacher, in 1981. Despite this, the Lacks family continued to face financial struggles. Zakariyya, after being released from jail, had difficulties keeping a job and often found himself without a home. He held his father, Day, responsible for Henrietta's passing and the abuse he endured from Ethel. Sonny's main source of income came from a food stamp scheme, while Alfred Jr. was persistently in legal trouble and had even deserted the Marines. The biggest influx of money for the family was a class action lawsuit payout against a boiler company that exposed Bethlehem Steel employees to asbestos. In 1985, Michael Gold, a science writer, published a book about HeLa contamination. Deborah, scanning through the book, came across parts of Henrietta’s medical history that were unknown to the family. Skloot had a conversation with Gold, however, he didn’t recall how he obtained Henrietta's medical records. Jones and McKusick denied giving them to him. Gold acknowledged he tried, albeit weakly, to reach out to the Lacks family, admitting that his main concern was the scientific facets of the story, and he saw Henrietta's personal details as supplemental tidbits to add depth to his work.

chapter 27

In '84, a German researcher identified a new form of the human papilloma virus (HPV), which can result in cervical cancer. He also found out that this particular HPV variant was responsible for Henrietta's cancer. Henrietta's family had unique theories about the reason for her severe cancer. Gladys, her sister, speculated it was divine punishment while Cootie hinted at illness-inducing phantoms. Sadie pondered if a foreign entity had entered Henrietta. During the early 90s, a pair of scientists debated that HeLa had mutated so much it couldn't be considered human anymore. Others in the scientific community thought this belief arose from scientists trying to avoid the moral implications of using human cells. Meanwhile, some scientists thought HeLa could unlock the secret to prolonging human life. Leonard Hayflick, in 1961, established that cells can only divide approximately fifty times before dying, a fact known as the Hayflick limit. However, illnesses like cancer could potentially override the cells' Hayflick limit.

chapter 28

In 1996, a documentary about Henrietta Lacks was being created by BBC. Deborah, Henrietta's daughter, was a part of the project, hoping it would bring closure if her mother's story was known. However, she was often asked to stay on track when she began talking extensively about Henrietta. The project involved attending a conference organized in Henrietta’s honor by Pattillo. The documentary caught the attention of Speed, the founder of a group celebrating significant African American individuals from Turner Station. He, along with Barbara Wyche, a sociologist, established a foundation aiming to honor Henrietta with a museum. When someone proposed that Deborah should donate her mother’s Bible containing locks of hair from both Henrietta and Elsie, Deborah was outraged. She was angered by the fact that people were profiting off her mother's name for a museum while her family couldn't afford healthcare. Wyche appealed to government heads and the president of Johns Hopkins Hospital to acknowledge Henrietta's contributions. This provoked a few members at Hopkins to unofficially discuss potential actions. However, the publicity also led to an encounter with a dubious character, Sir Lord Keenan Cofield. Claiming to be a lawyer, Cofield insisted the family should copyright Henrietta’s name and file a lawsuit against Hopkins. A Hopkins lawyer warned the Lacks family about Cofield’s fraudulent behavior. After being dismissed by the family, Cofield attempted to sue them, Speed’s foundation, and some individuals at Hopkins. Deborah was devastated when she received the summons and even suspected Speed of collaborating with Cofield. She asked Speed to cease the foundation’s operations. The Hopkins lawyer reassured Deborah they would counter Cofield, and his lawsuit was eventually dismissed. Amid all this, Deborah suffered a stroke due to stress. Around the same time, she discovered from Henrietta’s medical records that Elsie had been admitted to Crownsville. Regrettably, all the records from Crownsville during that period were lost in a fire.

chapter 29

For almost a year following their initial conversation, Deborah declined to communicate with Skloot. Throughout this period, Skloot provided Deborah with information she uncovered about Henrietta. Eventually, Deborah decided to assist Skloot, stipulating that Henrietta's full name, all five Lacks children, and the entire Lacks family history, both positive and negative, must be included in the book. She had a strong desire to understand what befell her mother and sibling. Upon meeting with Skloot, Deborah was shown a picture from a researcher at Hopkins, Christoph Lengauer. Following an article Skloot had published in Johns Hopkins Magazine, Lengauer shared an image of a gene mapping method he created using HeLa cells. Under UV light, the chromosomes glowed in stunning colors. He also extended an invitation to the Lacks family to visit his lab at Hopkins and see the cells. Deborah found the image striking, but felt a little sad that there were more pictures of HeLa cells than of her own mother. However, she was eager to understand how the HeLa cells were beneficial to others. Unlike her siblings, she no longer harbored any expectations of financial gain from her mother's cells. With so many incredible tales about her mother and HeLa, it was a challenge for her to separate truth from fabrication. Skloot finally clarified to Deborah that the blood samples requested by McKusick were not for cancer diagnostic purposes but for DNA analysis. This frustrated Deborah, as McKusick had not made this clear and had given her an autographed copy of his book that she found difficult to comprehend. Deborah was deeply distrustful due to the lack of transparency from Hopkins and the media. Occasionally, she would vent her frustrations on Skloot, even accusing her of attempting to steal Henrietta's medical files at one point.

chapter 30

Skloot was apprehensive about encountering Zakariyya due to his track record of violent behavior, but Deborah reassured her that he was prepared to converse. By then, Zakariyya was nearing fifty and resided in an assisted living home due to his semi-deafness and partial blindness. Deborah vowed to monitor their discussion from afar and interfere if the situation became volatile. Zakariyya expressed his fury towards George Gey for extracting Henrietta’s cells, pointing out that the Lacks family was unable to afford medical care. He felt that only the affluent benefited from the treatments made from his mother's cells. Zakariyya felt his aggressive nature stemmed from having to battle cancer from the womb. He declared that he preferred his mother to be alive to care for him even though her cells had contributed to medical advancements. Deborah highlighted that most reporters avoided Zakariyya due to his aggressive nature, but it was crucial to include his perspective. Deborah presented Zakariyya with the picture sent by Lengauer, and told him she wanted him to have it. Overwhelmed, Zakariyya began to weep. Skloot conveyed that Lengauer was keen to meet the Lacks offspring and show them the cells. Zakariyya gave his consent.

chapter 31

After meeting with Zakariyya, Deborah was asked by a stranger to join a HeLa float at a black rodeo. The man warned her against trusting white journalists, a sentiment Lawrence echoed. This prompted Deborah to initially withdraw from Skloot's project, although she soon reversed her decision. During this time, a bond formed between Skloot and Deborah, marked by shared reading of science books and outings to science museums with Deborah's kids. Despite being financially strapped and bound by journalistic ethics, Skloot made a promise to establish a scholarship fund for Henrietta's offspring. Deborah reasoned that if she had been better educated, she would have been less fearful of the HeLa cells situation. Haunted by sleepless nights, Deborah started searching “Henrietta Lacks” and “HeLa” on Google. She shared that she had several diagnosed medical conditions and was burdened by the high costs of treatment. Despite not wanting to sue Hopkins, she wished she could afford the healthcare advances that HeLa had made possible. In 2001, the National Foundation for Cancer Research's president asked Deborah to participate in a conference in Henrietta's honor. Excited, Deborah accepted and also decided to seize Lengauer's previous offer, believing it would help her better understand the scientific dialogues at the conference.

chapter 32

Deborah, Zakariyya, and Skloot make a trip to Hopkins to see the HeLa cells, with Day too sick to join, Sonny at work, and Lawrence contemplating suing Hopkins. Lengauer expresses his gratitude for their visit and acknowledges the difficulty it must have been for Deborah and Zakariyya to step into a Hopkins lab. He displays the freezer where HeLa samples are stored, commenting that the HeLa contamination was a sort of poetic justice for the wrongs done to the Lackses by science. Lengauer hands Deborah a vial of HeLa cells, which she kisses. He then guides both Deborah and Zakariyya on how to observe the cells under a microscope. Over the next 30 minutes, they gain a deeper understanding of cells, their questions about Henrietta’s sickness and cells clarified by Lengauer. Both siblings are taken aback when Lengauer concedes that Hopkins erred in its handling of the Lacks family. Furthermore, he believes the family deserves a share of the profits generated from the HeLa cells. The visit concludes with Lengauer sharing his contact information with the Lackses, offering his help for any additional queries related to cells.

chapter 33

Skloot and Deborah visited Crownsville the following day, intending to unearth any details about Elsie's past. They encountered Paul Lurz, a supervisor who cautioned Deborah about the dismal conditions at Crownsville during the mid-twentieth century when it was known as the Hospital for the Negro Insane. Deborah shared that Elsie's seizures were frequent, but suspected that deafness may have also played a part in Elsie's issues. Lurz discovered an autopsy report and a disturbing photo demonstrating Elsie's apparent neglect. Deborah requested a copy of the autopsy document. As Lurz made duplicates, he showed Deborah an old newspaper clipping from 1958, revealing deadly overcrowding at the institution. The report was chilling, exposing the hospital's unethical medical practices such as pneumoencephalography, a discomforting operation that replaced brain fluid with helium for x-ray purposes. This procedure was performed on epileptic children, including, most likely, Elsie. Despite her evident distress, Deborah expressed her desire to visit the Maryland State Records Archive in search of Elsie's medical history, which unfortunately was not found. The emotional strain of the day was visibly taking a toll on Deborah. When the day concluded and they retreated to their hotel rooms, Deborah handed Skloot a copy of Henrietta's medical files.

chapter 34

Deborah watched as Skloot sifted through the multitude of medical documents. When Skloot requested to copy vital pages, Deborah refused. Her mood fluctuated throughout the night, sometimes excited about a new discovery or worried about Skloot handling the documents. Deborah began to discuss the picture of Elsie, expressing her distress. She started examining the terminology in Elsie's autopsy report. She would dictate to Skloot which terms not to use in her book whenever she found them objectionable. Skloot agreed to her terms, smiling at Deborah's protective nature. However, Deborah misconstrued this as nonchalance, leading to her suspicion. Frustrated, Skloot raised her voice at Deborah. Deborah admitted her worry stemmed from Skloot's consistent calmness. She also detailed the Cofield incident. She made Skloot commit to not reproduce the entire records or disclose all the details in the book. Skloot complied. By daybreak, Deborah was showing signs of hives. However, during breakfast the following day, Deborah eased Skloot's concerns by confirming that everything was alright.

chapter 35

Despite her hives, Deborah's unstable conduct persisted in Clover. Her cousin, Gary, advised her to calm down, but she couldn't let go of her worries concerning Henrietta and Elsie. Gary, who professed to be a conduit of God, initiated a spiritual ceremony. Shivering, he embraced Deborah and began singing, asking God to relieve her of the cell-related stress. Skloot, observing the spectacle, was consumed by a sense of guilt for the emotional turmoil she had thrust upon Deborah. Gary persisted with the ceremony, declaring it was God's will for Skloot to shoulder the cell-related burden, freeing Deborah of it. Post-ceremony, Deborah's demeanor improved significantly, and she expressed gratitude towards Gary for his assistance.

chapter 36

On the following day, Skloot had a conversation with Gary as Deborah attended a medical appointment. Gary presented Skloot with a Bible, asserting that Henrietta's cells constituted evidence of achievable immortality. In his viewpoint, God had selected Henrietta to fulfill an angelic role, and her cells represented her chosen form. This made Skloot comprehend the preference of many in the Lacks family for a religious interpretation of Henrietta's eternal life over scientific explanations.

chapter 37

Deborah's health was at risk due to high blood pressure and blood sugar, making her prone to another stroke. Her doctor advised her to eschew stress, leading her to cease accompanying Skloot on research trips, but she requested regular updates. She also began adult education classes to better understand science. As the Research for Cancer Foundation Conference drew near, Skloot was anxious about Deborah's health, yet Deborah insisted she was fine. Before the conference, Zakariyya and Lawrence tried to control Deborah's communication, and Lawrence even asked for all of Henrietta’s records. Sonny, however, encouraged them to let Deborah decide for herself. The conference was set for September 11, 2001, but after the terrorist attacks, the event in D.C. was cancelled. Five days post the conference cancellation, Deborah suffered a stroke during a church service. Fortunately, she recovered fully and it even strengthened her resolve to learn more about science. However, the financial strain of the courses made her divert her focus on the education of her grandchildren and grand nieces and nephews. A couple of months later, Skloot was present for Sonny’s granddaughter's baptism at Pullum’s church. Pullum took this opportunity to let Skloot share with the congregation about Henrietta and her cell contributions. He expressed the unfortunate reality that the Lacks family may never reap benefits from their mother’s cells, but at least Henrietta's name would be known. He urged her grandchildren to draw inspiration from Henrietta's legacy and strive to make a difference in the world.

chapter 38

Skloot arrived in Clover on July 18, 2009, only to find the town demolished. It seemed as though everything connected to Henrietta Lacks was disappearing, with numerous family members, including Day, Gary, and Cootie, having passed away. Sonny was burdened with debt after undergoing a major heart surgery in 2003, and Zakariyya had been evicted from multiple residences. Deborah separated from Pullum and shifted to a senior living apartment. Skloot's visit to Clover was meant to assist Deborah with reading the draft of this book. However, Deborah had stopped responding to her calls. Skloot thought Deborah needed time to accept the completion of the book, but when she didn't hear from Deborah for several months, she contacted Sonny. Sonny revealed to Skloot that Deborah had suffered a fatal heart attack shortly after Mother’s Day. Despite the loss, Sonny asserted Deborah had been content. Henrietta’s legacy lived on as Erika, the granddaughter of Lawrence and Bobette, became the first Lacks family member to pursue graduate studies. Skloot recalled a moment when Deborah shared a video that didn't make it into the BBC documentary. In the video, Deborah presented Henrietta's Bible to the interviewer, telling them she often looked at her mother's hair to feel less lonely. She expressed her longing to have known her mother and her hope to meet her someday. That day, Deborah told Skloot she fantasized about reincarnating as HeLa cells so that she and her mother could jointly contribute to the betterment of the world.

afterword

The closing remarks of the book delve into the contemporary issues regarding cell research and ownership as of 2010. It's a prevalent practice to store tissue samples from regular medical procedures of many Americans. However, the legal clarity around individual rights over these samples is vague. The debate mainly revolves around two key points: consent and profit. Doctors do need permission to collect a patient's tissue for research, but oddly, they don't need one for using diagnostic samples for the same purpose. Advocates of tissue rights insist on patients having a say in how their samples are used, expressing worries about privacy. Some physicians, on the other hand, believe public health interests should take precedent over individual consent and privacy concerns. Profit is another significant area of dispute. Donors of tissues used in research aren't paid, and there's no consensus on how to rectify this. The issue of gene patents further complicates matters. Pharma companies, scientists, and universities hold these patents, thus dictating the research on specific genes and the cost of tests. The book ends with Skloot discussing potential legal alternatives available to the Lacks family. Some legal advisors hinted that since the Lacks children share DNA with HeLa cells, they could argue that studying these cells equates to studying them. As per the 'common rule,' a research subject can opt out of the study anytime, hence, the Lacks children could potentially demand withdrawal of the cells from research. However, this seems unlikely. Sonny confided in Skloot that his intention was not to hamper scientific progress, and he believed Deborah would have felt the same. What he desired was someone acknowledging and making amends with their family.