“But I tell you one thing, I don’t want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that’s just sad.”
Prologue: The Woman in the Photography & Chapter 1: The Exam (1951)
Hanging on Rebecca Skloot’s wall is a black and white picture of Henrietta Lacks. She has her hands on her hips and a mischievous smile on her face.
Rebecca first became interested in Henrietta’s story when a biology instructor told the story of how this unknown woman’s cells were used to create the first immortal line of cells used for medical research. Her growing interest in Henrietta resulted in the decision to write a book. The next ten years or Rebecca’s life were spent working with the Lacks family to uncover the true identity of Henrietta Lacks — a task that led her to re-examine her understanding of race, faith, science, and ethics.
It all started when Henrietta Lacks went to the Johns Hopkins University hospital to examine a “knot on her womb” that had given her pain for the last year. Dr. Howard Jones took a sample of a shiny, nickel-sized purple lump on Henrietta’s cervix and sent it to the lab for testing. He noted that there had been no abnormalities observed four months earlier when she had delivered a baby, nor when she had come in for a follow-up six weeks later.
The prologue not only gives the reader an introduction to the story of Henrietta Lacks, it provides insight about Rebecca Skloot. Here is a young woman who has spent ten years researching a person with whom she has absolutely nothing in common. And why? Rebecca is intrigued by the medical and personal mystery surrounding Henrietta. It is clear that her teenage curiosity in the woman evolved into a full-blown, life-altering obsession.
The simple, almost clinical, description of Henrietta’s first appointment with Dr. Howard Jones hints at something sinister just below the surface. The reader knows that Henrietta is doomed, otherwise the book wouldn’t be in existence, but the shiver running up the spine comes from something else: Dr. Jones’s note that the lump hadn’t been noticed before. This means that either the medical professionals that had seen Henrietta previously were negligent during the examinations or the lump is incredibly fast-growing. Both options are incredibly disturbing.
Chapter 2: Clover (1920-1942) & Chapter 3: Diagnosis and Treatment (1951)
Henrietta Lacks was born as Loretta Pleasant on August 1, 1920 in Roanoke, Virginia. Her mother died in childbirth four years later and Henrietta’s father moved the family to Clover, Virginia where she lived with her grandfather. Growing up in the same house was David “Day” Lacks, Henrietta’s cousin, with whom she ended up falling in love. They had their first child together when Henrietta was 14 years old and their second when she was 18, though they did not marry until 1941. The couple moved to Turners Station just outside of Baltimore, Maryland when World War II broke out so that Day could work at the Sparrows Point steel mill.
Dr. Richard TeLinde was one of the leading researchers of cervical cancer in the 1950s, and he had been working with Dr. George Gey to grow cancerous cervical tissues in a lab for quite awhile. When Henrietta went to Johns Hopkins for the treatment of her malignant tumor, the surgeon removed healthy and cancerous cervical tissue samples for Dr. Gey before putting tubes of radium into her cervix as treatment. Henrietta never knew about the samples.
It is disturbing that the doctors of such a respected medical institution as Johns Hopkins would take samples from a patient without her consent, but it is shocking that they would do it on a routine basis with so little thought. True it was the 1950s, the doctors were white, and Henrietta was an impoverished African American woman with little formal education, but she was still a person. It seems as though, in their minds at least, medical research was more important than patient rights. It makes one wonder how many other people had samples taken without their knowledge. And how many of these people were black versus white?
Chapter 4: The Birth of HeLa (1951) & Chapter 5: “Blackness Be Spreading All Inside” (1951)
In 1951, no one had successfully grown cells outside of the body. One of the problems was finding a suitable culture medium — chicken plasma, human umbilical cord blood, and calf fetuses were only some of the materials being used. Another problem was also inadequate sterilization processes,which led to culture contamination. Although Dr. Gey was adamant about paying keen attention to proper sterilization his own labs, he still couldn’t grow cells. That is until Henrietta’s cancerous cells, renamed HeLa, came along.
As HeLa grew, so did Henrietta’s cancer. She tried to keep up a normal life by going dancing, traveling to Clover on the weekends, and visiting her mentally disabled daughter at Crownsville State Hospital. Life was hard for her, however, with the x-ray cancer treatments turning the skin of her torso black and the radium tubes making her infertile. No one had told her any of the side effects of her treatments.
Up until this point, the medical practitioners who took Henrietta’s tissue samples without any regard of her patient rights seemed like heartless monsters. Here Skloot tells the other side of the story. Medical researchers like Dr. Gey were putting everything they had into finding a way to grow cells. Maybe some of them were doing it for wealth and prestige, but most seemed to do it purely for medical advancement. Because they viewed cell cultures as a key component of finding cures to diseases that would save millions of lives, they didn’t even wonder where their samples came from.
On the other hand, Skloot does not allow the reader to lose sight of Henrietta’s personal story. Despite the great things that the doctors may have been doing in the name of science and medical advancement, those tissue samples did come from somewhere and that person should not have been forgotten.
Chapter 6: “Lady’s on the Phone” (1999) & Chapter 7: The Death and Life of Cell Culture
Rebecca realized that the only way to tell Henrietta’s story was to get the cooperation of the Lacks family. She calls Dr. Roland Pattillo for help, but he is hesitant to help her contact the family until she makes it clear that she is aware of the how African Americans have been medically mistreated over the years. He eventually gives Rebecca the number of Henrietta’s sole surviving daughter, Deborah.
Things seem to go well during Rebecca’s first call with Deborah, who is rather incoherent but excited about the prospect of a book about her mother. The second call, however, does not go well at all and Deborah tells Rebecca to “convince the men” that the family should cooperate on the book. A call to Day only results in a hang up.
When Dr. Gey revealed that he had created an “immortal” cell line, there was very little interest due to decades of false reports about similar accomplishments. The most famous was in 1912 when Alexis Carrel claimed to have developed an immortal chicken heart cell culture. Not only did the culture end up being bogus, Carrel turned out to be a racist Nazi supporter.
There is an interesting juxtaposition between these chapters, one depicting Rebecca’s struggle with the Lacks family in 1990s and Dr. Gey’s difficulties gaining acceptance within the medical community in the 1950s. Both were trying to do good things, but both encountered roadblocks due to their colleagues’ past wrongs. In Rebecca’s case, the Lacks family had been used and abused by whites in general and white journalists in particular. In Gey’s case, the public had been tricked and let down by a whole string of scientists who had erroneously claimed to have created an immortal strain of cells. And yet, it is clear that neither Rebecca nor Gey gave up in the face of opposition.
Chapter 8: “A Miserable Specimen” (1951) & Chapter 9: Turners Station (1999)
Henrietta’s doctors deemed her treatments a success and the cancer gone despite her continued pain. It was an era when doctors always knew best, especially when the patient was an African-American woman, and it was quite a while before they examined Henrietta more carefully. By that time there was a huge, inoperable tumor in Henrietta’s abdomen that spread so rapidly that it seemed like a new tumor grew every day. The doctors increased her radiation therapy and eventually hospitalized her, but the pain grew worse and worse.
In the present day, Rebecca travels to Baltimore with the hopes of interviewing Sonny, one of Henrietta and Day’s sons, but he doesn’t return her calls. She goes to Turners Station to talk with Courtney Speed, who has tried to create a Henrietta Lacks museum, but she won’t talk to Rebecca without the family’s blessing. Instead, Speed shows Rebecca an old BBC documentary about Henrietta and HeLa, which gives Rebecca the idea to go to Clover and interview the extended Lacks family.
Even though the reader has always known that Henrietta would die from her cancer, it no less heartbreaking. Between the primitive cancer treatments and the poor healthcare that Henrietta received, her last months must have been excruciatingly painful. Skloot implies that though it was common in those days for the doctors to disregard patients’ complaints and concerns, the lack of attention given to Henrietta’s pain had more to do with her skin color. If that is true, then racism killed her as much as the tumors did.
Rebecca’s dealings with the Lacks family continues to be frustrating. The entire family seems to be extremely conflicted about speaking with Rebecca. On the one hand there must be a desire to have Henrietta’s story told, but on the other is an instinct not to trust a white journalist. This story has become as much about present and past race relations as it is about HeLa.
Chapter 10: The Other Side of the Tracks (1999) & Chapter 11: “The Devil of Pain Itself” (1951)
Rebecca visits Clover, VA to meet the extended Lacks family. She finds that the town has almost completely disappeared, but that “Lacks Town” is still home to quite a few family members. The most forthcoming of the Clover Lackses is Cootie, Henrietta’s cousin. After talking to him, it is clear to Rebecca that there has been a lot of confusion over the immortality of Henrietta’s cells. Cootie believes that they were created through voodoo.
By September 1951, Henrietta’s cancer had overtaken her entire body. All of those around her could see that she was in immense pain. After multiple blood transfusions, the doctors ceased all treatment and simply provided Henrietta with pain relief. Knowing that she was about to die, Henrietta asked her sister Gladys to make sure that Day took good care of the children. Henrietta died in October 1951.
What is the most striking about Skloot’s interview with Cootie is that no one ever explained HeLa to the Lacks family. The confusion stems in part from having little to no science education, but also from the medical field’s insensitivity towards Henrietta’s family. Because they did not have the tools to explain Henrietta’s “immortality” in scientific terms, of course they would depend on spiritual and religious explanations. How scary it must have been for the family all those years to think about Henrietta living on and on, being experimented on, and never allowed a chance to rest. No wonder they think that she was cursed.
Chapter 12: The Storm (1951) & Chapter 13: The HeLa Factory (1951-1953)
Although Day originally refused to allow the Johns Hopkins doctors to do an autopsy, he consented after Dr. Gey said that the tissue samples could help his children someday. Mary Kubicek, Gey’s assistant, was in charge of taking those samples. Seeing Henrietta’s chipped toenail polish was the first time that it dawned on her that HeLa came from a real person; she had always thought of the tissue samples in the abstract.
Because HeLa was so hearty and easy to grow, it quickly became the “workhorse” for cell research. The Tuskegee Institute built the first cell production factory using HeLa and grew around 20,000 test tubes of cells a week. They would send samples to any interested scientist for about $10 each. As the cell culture industry began to take off, researchers developed standardized methods for working with HeLa and made great medical and scientific advancements using the cells for experimentation. It wasn’t until Microbiological Associates launched the first large scale for-profit cell distribution center, however, that cell and tissue culture became a multibillion dollar industry.
As HeLa grew, Henrietta shrunk. Kubicek’s realization that Henrietta had been a real person with hopes and dreams and a family seems to be the last within the medical community. As more and more cells were produced in the lab, the original source of those cells began to matter less and less. It is easy to see how no one ever thought to tell the family about HeLa; it probably never crossed the researchers’ minds that the cells ever belonged to a family.
Those who want to donate their bodies or organs to science upon their death often feel that they are leaving a lasting legacy, that their contribution will be felt and appreciated by many. What Henrietta’s case shows is that while one’s organs may contribute a lot, there will be little appreciation shown for the donor. This may be a fact of life, but it is a sad fact.
Chapter 14: Helen Lane (1953-1954) & Chapter 15: “Too Young to Remember” (1951-1965)
Once word got out about HeLa, the press wanted to do stories on the woman behind the cells. Dr. Gey and Johns Hopkins did not want to reveal Henrietta’s name because doctor-patient confidentiality was beginning to be a standard practice. Eventually a Collier’s Magazine reporter got Gey to tell the story on the condition that the donor be called Helen L. In the article Gey also said that he had taken tissue samples after the patient’s death, not before.
When Henrietta died, Sonny was four, Deborah two, and Joe only one year old. Lawrence was a teenager, but he dropped out of school and joined the army, which took him away from home for two years. The younger children found themselves at the mercy of Ethel and Galen, Henrietta’s cousins who moved into Day’s house to help with the children. Ethel severely beat the children and Galen sexually molested Deborah. It wasn’t until 1959 when Lawrence returned and moved in with Bobbette that anybody did anything about the abuse. Bobbette moved the children to her house and told Ethel and Galen never to touch the children again.
Dr. Gey’s reaction to the publicity surrounding HeLa is puzzling. It is good that he has finally decided to start protecting his patient’s rights, but why not contact the family at this point. Surely he had to know that Henrietta’s true identity would come out. And why not ask the family if he could reveal her name, give her the credit that she was due? And most perplexing is his lie about taking the cells after Henrietta’s death. Has he finally realized that what he did was wrong? Is he ashamed and worried about public opinion? The refusal to reveal Henrietta’s name to the public, and even to her family, feels a lot like a cover up.
Maybe if the family had known about the cells, Deborah and her siblings would not have suffered so much. Out of such a huge family, it is interesting that someone who was not related by blood saved the children from Ethel’s abuse. Bobbette was also the only one to believe Deborah about Galen’s molestation.
Chapter 16: “Spending Eternity in the Same Place” (1999) & Chapter 17: Illegal, Immoral, and Deplorable (1954-1966)
Rebecca visits another Clover cousin named Cliff on the advice of Cootie. Cliff shows her the ruins of the old home-house where Henrietta grew up and Henrietta’s mother’s grave. Henrietta’s grave is unmarked. He explains that all of the black Lackses are descended from two white plantation owners — brothers named Albert and Benjamin Lacks.
After her visit to the Lacks graveyard, Rebecca interviews one of the white Lacks families, but they deny any relation to the black Lackses. Gladys, Henrietta’s sister, tells Rebecca that the white and black Lackses are related, however, even if they don’t mix much.
In the 1950s and early 1960s, the Nuremburg Code of ethics, which stated that patients must voluntarily give consent to be used in medical research, was considered a set of guidelines instead of law. This did not change until Dr. Chester Southam was held responsible for injecting HeLa cancer cells into patients without their knowledge. He injected over 600 patients, some of which already had cancer and others who were healthy, to see how their bodies reacted to the cancerous cells.
Henrietta has been described as a beautiful woman who was full of life and loved her children profusely, and yet no one talks about her. Her grave is unmarked. The only parts of her that are left in this world are her children and her cells. If it weren’t for the cells, she would have been completely forgotten just decades after her death. This is why it is so important that people remember her contribution to the world, but it is also important that they remember that there was more to her than HeLa. We have come a long way from the days of Dr. Chester Southam, but doctors more often than not still view patients as a collection of bones, muscles, and tissues rather than people. Remembering that Henrietta Lacks loved to paint her toenails and dance helps us remember that she was a real person, something that today’s medical researchers should still work to keep in mind when working with their tissue samples.
Chapter 18: “Strangest Hybrid (1960-1966) & Chapter 19: “The Most Critical Time on This Earth is Now” (1966-1973)
During the early 1960s, researchers began to fear that HeLa had contaminated other cells studied in their labs. They decided to reform their methods for handling cells and create a collection of known cell lines to use as reference when determining whether a cell culture has been contaminated.
While the science world was dealing with HeLa-related problems, Henrietta’s children were struggling to find their place in the world. Lawrence and Sonny were doing fine, but Deborah got pregnant when she was 16. Bobbette helped her finish high school and even helped her leave Cheetah, her abusive husband, when the time came. Joe, the youngest of the siblings was filled with anger and ran into the most trouble. After being discharged from the army for “failure to adjust,” he killed a man in Baltimore for which he was sentenced to 15 years in jail. While he was doing his time, Joe converted to Islam and changed his name to Zakariyya.
All of the problems that the scientists were having with HeLa contaminating other cell cultures is rather funny. It’s almost as if Henrietta was getting back at them for forgetting who she was and for using her in experiments that hurt people.
The problems facing Henrietta’s children, however, were definitely not funny. Deborah and Joe had the most problems and they were the youngest siblings who had no memory of Henrietta. Deborah obviously missed her mother and felt rudderless without knowing anything about the woman who gave birth to her. Joe’s sense of loss appears to have manifest itself in anger. Henrietta’s complete disappearance from their lives seems to have broken something in both of them.
Chapter 20: The HeLa Bomb (1966) & Chapter 21: Night Doctors (2000)
In 1966, a geneticist determined that HeLa cells were found in 18 cell lines commonly used for medical research. The widespread contamination invalidated years of work and supposed scientific advancement, especially in cancer research. Scientists started research to identify HeLa cells so that they could better determine whether or not a cell line was contaminated.
Rebecca finally meets the Lacks family in 2000. It quickly becomes clear to her that Day and Henrietta’s children do not have a clear understanding of HeLa. They believe that the “night doctors” took Henrietta’s cells from her, a common fear of African Americans in the area stemming from Johns Hopkins’s history of experimenting on black children. The family is angry that everyone says that Henrietta donated her cells when they had actually been taken without her knowledge. They also know that people have made a lot of money off of the sale of HeLa cells, and they want a cut of the money.
One of the greatest injustices of this story is that while Henrietta’s cells have helped save and improve the lives of millions of people, her own family cannot benefit from her sacrifice because they don’t have medical insurance. Even if Johns Hopkins didn’t make money off of the cells, they cannot get around the fact that they took Henrietta’s cells without her knowledge. It may have been a common practice in the 1950s, but that does not mean that they can atone today. It would not be difficult to set up a fund for the Lacks family that recognizes Henrietta and provides her family with free healthcare.
Chapter 22: “The Fame She So Richly Deserves” (1970-1973) & Chapter 23: “It’s Alive” (1973-1974)
Henrietta’s name first became public after George Gey died of pancreatic cancer and his colleagues went through his notes to write an article about HeLa in his honor. Others did not catch on for some time, however, and most articles still referred to the donor as Helen Lane for a few more years. It was not until a premier research journal published an article in 1973 proclaiming the real name of the woman whose cells gave birth to HeLa that Henrietta Lacks became famous.
Right around this time two events brought HeLa to the attention of the Lacks family: Bobbette discovered through a friend of a friend that Henrietta’s cells were being sold for research and Dr. Victor McKusick began investigating unique genetic markers in HeLa. Susan Hsu, Dr. McKusick’s research assistant, contacted the family for blood samples to do a DNA comparison with HeLa. The family didn’t understand why the doctors needed their blood and thought that they were being tested to see if they had the same cancer as Henrietta. There was huge miscommunication and Deborah was consumed with fear that she would die young like her mother. When she asked questions about Henrietta, Dr. McKusick gave her his genetics textbook. The language and concepts were so advanced that all Deborah understood from the book was that it contained a picture of Henrietta that she had never seen before.
At last Henrietta is acknowledged as the source of HeLa. Unfortunately, this acknowledgement only serves to confuse and upset her family. It was a huge oversight and complete lack of sensitivity on the part of Dr. McKusick not to sit down with the Lacks family himself and explain what happened to Henrietta, how HeLa came into being, and what his research sought to discover. He could have prevented years of anguish and miscommunication. Instead he gave Deborah a textbook that only college students studying advanced genetics could understand. Dr. McKusick treated the Lacks family with as little respect in 1973 as the 1950s doctors treated Henrietta.
Chapter 24: “Least They Can Do” (1975) & Chapter 25: “Who Told You You Could Sell My Spleen?” (1976-1988)
Michael Rogers wrote an article for Rolling Stone magazine about Henrietta and HeLa in 1975. When he interviewed the family, he tried to explain to them that the “immortality” of the cells did not mean that they were immortal or that they would get Henrietta’s cancer. The Lackses were still confused over the cells, but they did understand that people had made a lot of money selling them.
While her brothers became obsessed with getting their fair share of HeLa proceeds, Deborah tried to learn more about her mother. She researched HeLa, but did not understand most of what she read. She became convinced that her mother felt everything that was done to her cells, something that disturbed Deborah to the core.
At the same time, a white man named John Moore was fighting to receive a cut of the proceeds from the sale of tissue taken from his spleen. Although he eventually lost his lawsuit against UCLA and the doctor who had taken the tissue and developed the Mo cell line, it brought patient rights and ownership of biological products into public discourse. The Lacks family, however, never heard about Mr. Moore’s lawsuit.
The Moore case occurred over 30 years after Henrietta’s cells were taken without her knowledge, which just shows how little had changed in the way that doctors viewed their patients. How little it would have taken to get Moore’s informed consent. How little it would have taken for doctors to explain HeLa to the Lacks family.
It is truly despicable that a journalist with no medical training had to explain the cells to the Lackses, when it should have been a doctor. How disturbing that he knew more about Henrietta’s medical condition than her own family. And poor Deborah. It must have been awful to believe her mother felt the pain of a thousand diseases and experiments.
Chapter 26: Breach of Privacy (1981-1985) & Chapter 27: The Secret of Immortality (1984-1995)
The early 1980s saw the Lacks family in worse times than ever before. Zakariyya had finished his prison term, but still couldn’t hold down a job. Ironically, the only way he could make money was to serve as a medical research subject. Sonny landed in jail for trafficking drugs. Deborah’s son, Alfred, was constantly in and out of jail for minor offenses. Only Deborah seemed to be doing better — remarried to a seemingly good man and working various jobs.
Deborah still continued to research her mother’s life, death, and “immortality.” One of the books that she found, though, provided in depth information about her mother’s medical history. Such detail could only have come from Henrietta’s medical records, and Deborah wondered how the author could have gotten a hold of them.
Meanwhile, as the Lacks family struggled to survive, the medical community struggled with explaining why HeLa cells were stronger and more virulent than other cell lines. Although there were numerous theories and studies on the matter, no one was able to know for sure why HeLa is so different.
Although doctor-patient confidentiality was a tenet widely upheld by doctors, it was not a legally upheld practice at the time. When Skloot interviewed the author of the book that revealed Henrietta’s medical history, he said that he couldn’t remember where he had gotten the records. This seems rather convenient. Even though Dr. Howard and Dr. McKusick denied giving anyone Henrietta’s medical records, someone did. Someone felt it was OK to tell the world about Henrietta’s syphilis and HPV, the color of her tumor, and her private conversations with her doctor. Maybe they did it because she had been dead for decades or because they felt that her story was as much a property of the medical community as her cells. Or maybe, as seems to have been the case throughout her life (and death), they just didn’t view Henrietta as a real person.
Chapter 28: After London (1996-1999) & Chapter 29: A Village of Henriettas (2000)
By the late 1990s, Henrietta’s story was becoming increasingly well-known. The BBC made a documentary about her, Raymond Pattillo organized the first annual HeLa Cancer Control Symposium, and Courtney Speed and Barbara Wyche tried to found a museum in Turners Station honoring Henrietta. The Lacks siblings were proud of the recognition their mother was receiving but were resentful that they still couldn’t afford their own healthcare. Johns Hopkins continued to take the stand that their medical practices regarding Henrietta were consistent with those of the time and that they had never received any profits from the sale of HeLa.
Adding to the family’s confusion during this time was Sir Lord Keenan Kester Colfield, a con man who tried to get the Lackses to release Henrietta’s medical records to him. Johns Hopkins identified the con and protected the Lacks family, which led Colfield to sue the hospital and the family. The fallout from the lawsuit was that Johns Hopkins cancelled plans to honor Henrietta and Deborah had a nervous breakdown.
In 2000, Deborah finally agrees to meet with Rebecca. After the first meeting, they begin communicating regularly even though Deborah does not fully trust Rebecca and their relationship is tenuous. Nevertheless, Deborah opens up about her fears and confusion regarding HeLa.
It always seems that just when things start to go well for the Lacks family, something terrible happens. Colfield was obviously a sick and delusional man, but that does not excuse the world of hurt that he brought to the Lacks family. After everything that they had been through, it is no wonder that the family was so reluctant to start talking to Rebecca. Cofield was the worst example of how people took advantage of the Lackses, but it seems as though even those who meant well wanted to basque in a piece of Henrietta’s glory rather than actually help her family.
Chapter 30: Zakariyya (2000) & Chapter 31: Hela, Goddess of Death (2000-2001)
Deborah takes Rebecca to meet the volatile Zakariyya, something that Rebecca knows must happen but is terrified to do. Zakariyya has a few outbursts but generally controls his temper. He explains that he is resentful that the doctors took Henrietta’s cells and then used them to help everyone except the Lacks family. Although Deborah blames Ethel’s abuse for Zakariyya’s anger problems, he believes that fighting the tumor while he was in Henrietta’s womb made him so mean.
Eventually Deborah begins to trust Rebecca and opens up to her about her troubles and fears. Rebecca promises to set up a scholarship fund for Henrietta’s descendants if the book is published so that the Lacks family can benefit from the good that HeLa has done. When Deborah learns that the National Foundation for Cancer Research is going to honor Henrietta at a conference, she excitedly plans to attend. She has to cancel at the last minute, however, when her son ends up in jail for stealing a car.
These chapters may be describing the Lacks family, but they speak more about Rebecca. She may have gotten into all this because she was curious about Henrietta, but now she is emotionally tied to the family. Her book has become less and less about Henrietta and more about her descendants. What makes Rebecca different from everyone else who wanted to honor Henrietta is that she cares about the well-being of the Lacks family; she sees them for them and not just for their ties to HeLa. The promise of the scholarship fund and focusing this last part of the book on Deborah and her siblings recognizes Henrietta and her family as real people more than any documentary or HeLa conference.
Chapter 32: “All That’s My Mother” (2001) & Chapter 33: The Hospital for the Negro Insane (2001)
Rebecca takes Deborah and Zakariyya to Cristoph Lengauer’s lab in Johns Hopkins where he shows them HeLa cells. He also gives them a long overdue explanation of how the cells are grown and used, and what it means when everyone says that Henrietta’s cells are “immortal.” The visit does a lot to clear up decades of misunderstandings, and both Deborah and Zakariyya are emotionally thankful.
Deborah has always wanted to know about her sister Elsie, so Rebecca takes her to Crownsville Hospital Center where Elsie lived and died. They find a disturbing picture of Elsie and her death certificate, as well as documentation on some horrible studies done at the hospital while she was there. When Deborah and Rebecca return to their hotel that night, Deborah gives Rebecca Henrietta’s medical records to examine.
Rebecca appears to have become even more emotionally involved with the Lacks family, especially Deborah. She is obviously proud that she was able to take Zakariyya and Deborah to Lengauer’s lab and give them some peace of mind at long last, but the emotions seem to run deeper than that. The way that Rebecca writes about the scene, the reader can feel that she actually shared the relief and joy felt by Zakariyya and Deborah. The scenes at Crownsville Hospital Center, however, are dripping with horror. Rebecca seems to be just as disturbed as Deborah by what they found out there about Elsie. Perhaps Deborah senses this change in Rebecca and that is why she finally forfeits Henrietta’s medical records.
Chapter 34: The Medical Records (2001) & Chapter 35: Soul Cleansing (2001)
The night that Deborah gives Rebecca the medical records turns out to be a long and volatile one. Soon after giving Rebecca the papers, Deborah comes back and demands that they go through everything together. She accuses Rebecca of being paid to take records and hurls other insults as well. When Rebecca finally yells back at Deborah, the tension is broken and Deborah opens up again. The next day Deborah appears covered in hives, but trying to make things right with a hesitant Rebecca.
The two women continue on to Clover where they visit the home-house, Henrietta’s grave, Gladys, and some of the Clover cousins. Deborah grows increasingly manic until one of the cousins prays with her and asks that Deborah’s burdens transfer to Rebecca. This immediately calms Deborah down who says that she “feels lighter.”
These two chapters feel surreal. One moment Deborah is kind and gentle, the next she is manically destructive and lashing out at Rebecca. The prayer scene in Clover is completely bewildering. Of course, the reader must remember that these events are told from Rebecca’s perspective. Deborah’s strange behavior in the hotel room would be more than a little terrifying for most people, but especially for a 29-year-old woman who had grown up in a household where abuse was unheard of. Rebecca also grew up without much religion in her life, so the prayer scene would be both baffling and eery to her. One has to wonder how these chapters would have been different if written by Deborah.
Chapter 36: Heavenly Bodies (2001) & Chapter 37: “Nothing To Be Scared About” (2001)
Although Deborah returns to Baltimore to get medical attention for her hives, Rebecca stays in Clover to talk to one of the cousins about the prayer session. He explains to her that he and most of the Lacks family believe that HeLa is the spiritual body of Henrietta. He points to certain passages in the Bible that helps Rebecca understand how religious explanations of HeLa would make more sense to them than the scientific explanations.
Deborah’s doctor tells her that her blood pressure and blood sugar are too high, and that she needs to reduce her stress levels. This explains the erratic behavior during the trip to Clover. Since Deborah can’t go on anymore research trips, Rebecca keeps her posted on developments, though she is sure to only mention the good things. Deborah seems to be in higher spirits and eager to learn about the science behind the HeLa cells. Lack of money and a stroke keep Deborah from going forward with her plans for self betterment. Rebecca observes that Henrietta’s children won’t benefit from HeLa, but that it is not too late for the grandchildren and other future generations of Lackses.
Things are winding down in the Lacks family story. Hope is intermingled with tragedy. What is most striking about these chapters is once again Rebecca’s growth. She obviously has a scientific mind, but she was able to open up to the idea of HeLa being a spiritual manifestation of Henrietta. She may not really believe this herself, but she recognizes it as a valid belief — something that most scientists would never be able to do. Rebecca also seems to take on the burden of ensuring the welfare of the Lacks family, just as the prayer demanded. She may not be a Lacks herself, but Rebecca Skloot is now forever intertwined with the family. She won’t ever be able to turn her back on them.
Chapter 38: The Long Road to Clover (2009) & Afterward
It is 2009 Rebecca has finally finished the book and wants to read it to Deborah. After numerous calls that went unreturned, Rebecca calls Sonny and learns that Deborah died a little over a week earlier. It is a great blow to Rebecca, but she is knows that Deborah was happy in the end. Although the older Lacks family members were still struggling, the grandchildren were all doing well. Rebecca remembers her last meeting with Deborah, who said that she would like to die calmly and maybe come back as a HeLa cell like her mother and do some good for the world.
Rebecca believes that there are two major issues regarding research using human tissue: money and consent. There is a lot of debate around whether doctors have to tell patients how much their tissues could be worth, and whether the patients have rights to any profits. And although there are numerous regulations requiring that patients give informed consent for their tissues to be used in research, tissue rights advocates want patients to have more control.
It is frustrating that Deborah never got to read the final draft of The Immortal Life of Henrietta Lacks, but seems as though both Deborah and Henrietta’s legacies have been secured within its pages. Just as Rebecca predicted, the struggles of Henrietta and her children were not in vain — the next generations of Lacks will benefit from HeLa. They are on the path to achieving more than any of their predecessors could even have imagined. As for Rebecca, it sounds like she gained as much out of the book as the Lackses, and that she will continue to play a role in the family’s lives.