The Immortal Life of Henrietta Lacks Rebecca Skloot Study Guide Prologue: The Woman in the Photograph Describes a picture of Henrietta Lacks that the author has on her wall, and uses this to introduce the story of this book, concerning the development of the HeLa cell line, from cervical cancer tissues taken from Henrietta Lacks. The author’s interest in this began in a biology class, when her instructor told the story of how, although those cells were used to develop the first immortal line of cells for biological/medical research, little was known of the woman who had been their source. The author’s interest in this story continued over the next several years, resulting in her decision to write a book about the Henrietta Lacks story. This task took over ten years of her life, and what she learned, in meeting and working with the Lacks family, particularly Deborah, Henrietta’s daughter, came to challenge everything she thought she knew about faith, science, journalism, and race. Questions 1. How does the author create an interest in learning more about the story of Henrietta Lacks? 2. How well does the author provide the reader with a sense of what this book is about? Deborah’s Voice Brief excerpt from Deborah’s comments, revealing her ambivalence about being the daughter of Henrietta Lacks, pride in knowing that her mother’s cells have contributed so much to science, confusion as to what her role was, anger that her family has received so little, and a sense of loss in not having known her mother. Questions 1. What is your impression of Deborah, given this brief excerpt? How does the author shape that impression? Chapter 1: The Exam (1951) Henrietta Lacks goes to the gynecology clinic at Johns Hopkins asking for a doctor to examine a “knot on her womb.” She had been having some pain for about a year, and discussed it with her cousins, but not done anything until the pains got more severe. The local doctor had tested her for syphilis, which was negative, and advised her to go to Hopkins, a university hospital that was the only major hospital in the area that would treat black patients during this time, the Jim Crow era. The Immortal Life – Study Guide 2 Patient records detail some of her prior history and provide the reader with background: she is described as being one of ten siblings, having six or seven years of education, five children of her own, a history of apparently declining suggested medical treatments, with a recent history of vaginal bleeding and blood in urine. But she had not followed up on recent clinic visits. Exam revealed a shiny purple lump on the cervix about the size of a nickel. Dr. Howard Jones took a sample and sent it to the lab. He observed that no abnormality had been noted when she had delivered a baby some four month earlier, or at the six week follow-up. Questions 1. What does this chapter suggest to you about Henrietta Lacks’ ability to understand and make informed decisions about her treatment at the clinic? 2. How would you describe Henrietta’s attitudes toward medical care? 3. What does the term “Jim Crow era” mean? Chapter 2: Clover (1920 –1942) Henrietta Lacks (born Loretta Pleasant) born August 1, 1920 in Roanoke, Va. After her mother died in 1924, giving birth to her tenth child, her father took the children back to the Clover, Va., where they were split up to live with relatives. Henrietta was sent to live with her grandfather, Tommy Lacks, in the home-house. Her eightyear old cousin, David (Day), also lived there. Describes what it was like to grow up in this small, tobacco farming community, and relates some stories of Henrietta’s experiences, as told by relatives including her sister, Gladys, and her cousin, Sadie. Henrietta and Day had a son, Lawrence, when Henrietta was 14, and a daughter, Lucile Elsie Pleasant, when she was 18. They married on April 10. 1941. After the US entered World War II, a cousin enticed Day to come work at the Sparrows Point steel mill in Maryland. A few months later Henrietta and the children joined him and moved into housing for African American workers at Turner Station. Questions 1. What do you think of the description of Henrietta’s childhood years in Clover? 2. What is your impression of Henrietta after reading this chapter? 3. What are your thoughts about the employment opportunities for black men at Sparrows Point? Chapter 3: Diagnosis and Treatment (1951) Two narratives are presented: one detailing the medical understanding and treatment of cervical cancer in the early 50s, the other describing Henrietta’s experience in treatment at Johns Hopkins. Dr. Richard TeLinde at Johns Hopkins was one of the leading researchers in the field, interested in demonstrating the then debated claim that noninvasive (in situ) cervical cancer was simply invasive cancer at an earlier stage. To test this he needed to grow normal cervical tissue and tissues The Immortal Life – Study Guide 3 from both types of cancer in the laboratory, and he enlisted Dr. George Gey, head of tissue culture research, to assist him. Gey and his wife, Margaret, had been trying for decades to develop an immortal human cell line and grow malignant cells outside the body; TeLinde offered him a number of cervical cancer samples, including Henrietta’s. Henrietta’s story describes her experiences in returning to Johns Hopkins after the diagnosis of a malignancy. She signed a statement permitting any surgery deemed necessary, went through multiple tests, and was operated on: the surgeon removed two samples of cervical tissue, one from the tumor and another from healthy cervical tissue nearby to send to Dr. Gey, and inserted tubes of radium into her cervix to kill the cancer. Questions 1. What is your impression of medical understanding and treatment of cervical cancer in 1951? 2. Do you believe that Dr. TeLinde’s research was important and justified? 3. What are your thoughts on using radium to treat cancer, when it is also a cause of cancer? 4. Read the Operation Permit that Henrietta signed. Do you think it gave the hospital the right to take tissue from Henrietta for research purposes? Do you think Henrietta was able to understand what she was signing? Chapter 4: The Birth of HeLa (1951) Describes Gey’s tissue culture research lab at Johns Hopkins and explains the state of the art in 1951, when Gey was attempting to develop a culture medium, using a variety of possible nutrients, including chicken plasma, calf fetuses, and human umbilical cord blood. Describes the sterilization and laboratory procedures employed in attempting to grow new cell lines, as the HeLa (first two letters of Henrietta Lacks’ names) cells were prepared. In contrast to prior attempts, the cancerous HeLa cells began successfully growing (the normal cells died). Gey began giving samples of these new cells to his colleagues. Questions 1. What is your impression of Dr. Gey? What evidence of his dedication to his work is given in this chapter? 2. Why did Dr. Gey give samples of the HeLa cells to his colleagues? 3. What are your thoughts on the issue of sterile procedures in the lab, given the descriptions of the lab in this chapter? Chapter 5: “Blackness Be Spreadin All Inside” (1951) Relates more information about Henrietta’s life, including having to send Elsie to Crownsville State Hospital. She tries to maintain as normal a life as possible while The Immortal Life – Study Guide 4 undergoing cancer treatment, including going out dancing, returning to Clover on weekends, and visiting Elsie. Introduces her cousin, Galen, and his wife, Ethel, who seemed to dislike Henrietta, possibly because Galen was attracted to her. The x-ray treatments charred her skin, turning it black from breast to pelvis. She is surprised to learn that her surgery has made her unable to have children, saying that she had not been informed, even though that was part of standard hospital procedures. While undergoing treatment she is also diagnosed with gonorrhea, probably contracted from Day. Questions 1. How well do you think Henrietta understood her illness? Her treatment? 2. Why was Henrietta surprised to learn that she could not have children? Do you think she was not told, that she didn’t understand what she had been told, or that she had forgotten? Chapter 6: “Lady’s on the Phone” (1999) Rebecca Skloot calls Dr. Roland Pattillo at Morehouse School of Medicine to get his assistance in contacting the Lacks family, but he is hesitant. In response to his questions she relates her knowledge of the Tuskegee syphilis study, the Mississippi Appendectomy study, and underfunding of sickle-cell anemia, events that reflected medical mistreatment of African Americans. He gives her some information about the Lacks family, telling her that Elsie had died shortly after Henrietta, and then advises her on contacting Deborah, the only living daughter. Deborah responds very favorably and excitedly to her initial phone call, providing a lot of confusing information. On her second phone call, however, Deborah seems to have become resistant, and says Rebecca needs to “convince the men.” After repeated calls she finally contacts Day, but he hangs up on her. Questions 1. Why did Dr. Pattillo ask Rebecca Skloot what she knew about African Americans and science before deciding to let her contact the Lacks family? 2. Why do you think Deborah’s attitude changed so much from the first phone call to the second? 3. Given the responses from Deborah and Day, are you surprised that Rebecca Skloot continued this project? 4. From what was related in this chapter, how well do you think the Lacks family understood what had been done with Henrietta’s cells? Chapter 7: The Death and Life of Cell Culture Describes Dr. Gey’s work to develop and expand use of the HeLa cell line in a variety of medical research programs, and provides some historical context for understanding the status of cell culture, describing the work of Alexis Carrel, a The Immortal Life – Study Guide 5 Nobel-prize winning scientist, who claimed in 1912 to have developed an “immortal chicken heart” cell culture. Ultimately, however, Carrel’s eccentric, racist, and proNazi beliefs, and the subsequent revelation that his “immortal” cell line was probably bogus, had tarnished the image of cell culture research. Because of this, Gey’s announcement of his immortal cell line received little attention. Questions 1. Would it be possible for a scientist to make claims like Alexis Carrel’s today and have them as widely accepted by other scientists, the media, and the public? 2. Why was the development of an “immortal” cell line like HeLa potentially so important to medical research? Chapter 8: “A Miserable Specimen” (1951) Uses Henrietta’s treatment to examine the standard of medical care in that era, a period when doctors were considered to know what was best for their patients, and patients seldom questioned that. Also discusses the possibility that, in that era of segregation, the standard of medical care for African American patients was less than that for whites. On several follow-up visits doctors told Henrietta that she was fine, even though she reported increasing pain and discomfort. Finally, further examination revealed a large, hard mass in her abdomen, an inoperable cancer, which rapidly spread. The doctors increased the level of radiation therapy and ultimately hospitalized her, trying various (unsuccessful) methods for pain relief, and new tumors seemed to appear every day. An anecdote from one of Gey’s colleagues suggests that he visited Henrietta and told her that her cells would help save the lives of countless people. Questions 1. How did the elevated status of doctors in the 1950s affect the quality of the medical care they gave to their patients, both positively and negatively? 2. What is your impression of the medical care Henrietta received? Do you think it was less than what a white patient might have received? Chapter 9: Turner Station (1999) The author goes to Turner Station, near Baltimore, to interview the Lacks family. She tries to contact Sonny (Day’s son), but can’t get a return call. She drives to Turner Station to talk with Courtney Speed, who had been described as trying to build a Henrietta Lacks museum, but Speed is ambivalent, unwilling to talk to her until the family approves, mentioning concern about someone named Colfield, but eager to show her a BBC documentary about Henrietta and the HeLa cells. From viewing this, Skloot decides to visit Henrietta’s relatives in Clover. That evening she talks to Sonny, who says, with no explanation, that he has decided not to meet with her. He declines to put her in touch with family in Clover, but wishes her luck. The Immortal Life – Study Guide 6 Questions 1. What is your impression of Turner Station and the people who live there? 2. Based on what you have read so far, why do you think people are unwilling to talk to the author? Chapter 10: The Other Side of the Tracks (1999) The author goes to Clover, a small, barely surviving small town, and meets Cootie, Henrietta’s cousin, who still suffers from the effects of childhood polio. His stories about Henrietta reveal some of the confusion and misunderstanding about HeLa cells that are shared by many in the Lacks family. He suspects that the cells may have been created by voodoo rather than by doctors, and tells about his own encounters with spirits. Questions 1. What do you think of Cootie’s understanding of HeLa cells? 2. Why does the author mention the radio program that playing in the background when she was talking with Cootie? 3. What is your impression of Clover, given the description in this chapter? Chapter 11: “The Devil of Pain Itself” (1951) By September, Henrietta’s body was almost entirely taken over by tumors. She was in constant pain and needed multiple transfusions. Her cousin, Emmett Lacks, brought some of his coworkers to the hospital to give blood, and he saw what extreme pain she was suffering. Her sister, Gladys, and cousin, Sadie, are with her. Doctors ultimately cease all treatment except pain relief. Henrietta understands that she is going to die, and asks Gladys to make certain Day takes care of her children. Henrietta dies in October, 8 months after her diagnosis. Questions 1. How well liked was Henrietta in the Sparrows Point community? 2. Given the descriptions in this and other chapters, how close was the Lacks family? How does their family compare to your own, or to others you know about? 3. What is your reaction to the medical decisions regarding blood transfusions and discontinuing cancer treatment for Henrietta Lacks?