The Immortal Life of Henrietta Lacks Rebecca Skloot. Study Guide. Note to Instructors

Transcription

1 The Immortal Life of Henrietta Lacks Rebecca Skloot Study Guide In 1951 a poor young black woman, Henrietta Lacks, was diagnosed with cervical cancer at Johns Hopkins Hospital. Cells taken from her during that exam were used without her knowledge to develop the first immortal cell line. The cells, called HeLa, became one of the most important tools in medical research, vital for developing the polio vaccine, cloning, gene mapping, and more, but Henrietta Lacks, the person who was the source of these cells, was virtually unknown, and her family was never informed about what had been achieved using her cells. Although their mother s cells have been bought and sold by the billions the Lacks family have received nothing from those cell lines, and cannot even afford health insurance today. This book tells the stories of HeLa and of Henrietta Lacks and her descendants, especially her daughter, Deborah, who was consumed with questions about the mother she never knew. At the same time it traces the history of cell research and examines the ethical and legal issues raised by this research. About the Author Rebecca Skloot is an award- winning science writer, with a B.S. in biological sciences and an MFA in creative writing. She first heard about Henrietta Lacks and HeLa in a community college biology class when she was 16. As she continued her studies she became fixated on the idea of telling Henrietta s. She spent over a decade researching and writing this story, which has been translated into over 25 languages and is now being made into an HBO movie. She is also the founder and president of the Henrietta Lacks Foundation, a non- profit organization that provides financial assistance to needy individuals who have made important contributions to scientific research without personally benefitting from those contributions, particularly those used in research without their knowledge or consent. Note to Instructors This book combines two different stories: a narrative describing the fate of the Lacks family and another providing a very readable history of developments in cell biology and medical research and a consideration of the ethical issues involved in the use of tissues and cells taken from patients during diagnostic procedures. The author does an excellent job of braiding these two stories together, and provides the reader with a clear understanding of the ethical issues involved in this area. Each chapter begins with a time frame to help the reader understand the historical context of the topics covered there.

2 2 This is a general interest book, written at a level that makes it accessible to individuals with relatively limited science backgrounds. The clash of ethics, race, class, and medical research can provide discussion material for classes in a variety of disciplines, including sociology, psychology, modern history, ethics and philosophy, pre- med and nursing as well as biology. Business and pre- law students could benefit from a consideration of the issues involved in the commercial development of biological and medical products and the question of whether biological products should be patentable. The comprehension and discussion questions at the end of each chapter summary are intended to direct the students attention to the primary points that are being made, to get them to understand the arguments, and to look behind the information to understand the underlying values and beliefs. An interesting idea would be to get students to keep track of any shifts in their ideas concerning the question of whether or not the Lacks family should be compensated for use of their mother s cells, and by whom, as they continue reading the text. Teaching Ideas In addition to the questions at the end of each chapter, instructors can find a wealth of discussion points and further questions at a website developed by the author: Other material related to the book can be found on this website. This book was adopted as the First- Year Experience text at St. Bonaventure University in A reading guide developed for that program, including a time line and a Lacks family tree, can be found at: It could be interesting to have students investigate other topics related to the material presented in this text. For example, students might learn more about the Jim Crow era in the South, or conduct library/internet research on some of the other medical developments mentioned here (e.g., development of polio and HPV vaccines), gene patents, the Tuskegee experiment, etc. About this Guide s Writer Liane Bryson teaches in the Rhetoric and Writing Studies Department at San Diego State University and has been a member of the One Book, One San Diego committee since its inception. She has served as educational consultant to the Sweetwater Union High School District, San Diego City Schools, the San Dieguito Union High School District, and the Imperial County Office of Education. 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

3 3 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. 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. 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. 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. 1. What does this chapter suggest to you about Henrietta Lacks ability to understand and make informed decisions about her treatment at the clinic?

4 4 2. How would you describe Henrietta s attitudes toward medical care? 3. What does the term Jim Crow era mean? Chapter 2: Clover ( ) 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 eight- year 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 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. 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 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.

5 5 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. 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 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. 1. How well do you think Henrietta understood her illness? Her treatment?

6 6 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. 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 Nobel- prize winning scientist, who claimed in 1912 to have developed an immortal chicken heart cell culture. Ultimately, however, Carrel s eccentric, racist, and pro- Nazi 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. 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?

7 7 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. 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. 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

8 8 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. 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. 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? Part Two: Death Chapter 12: The Storm (1951) After Henrietta s death Dr. Gey asked that an autopsy be done so that he could obtain tissue samples. Day initially refused an autopsy, but later agreed when told that it would allow them to run tests that might help his children someday. Tissues were removed from multiple organs and stored in petri dishes; tumor growth was extensive. Gey s assistant remembered realizing that the body was a real person when she saw her chipped toenail polish. Henrietta s body was returned to Clover for the funeral. There was continual rain prior to and during the funeral, and the Lacks cousins remember that a sudden, deadly storm struck just as her coffin was lowered into the grave.

9 9 1. Why was it a surprise for Dr. Gey s assistant to suddenly think of Henrietta as a person when she saw the chipped toenail polish? Do doctors and scientists tend to see patients as bodies or specimens rather than as people? What other examples of this can you see in this book? Should doctors and scientists do this? Why or why not? 2. How did the Lacks cousins interpret the sudden storm during Henrietta s funeral? Do you agree? Chapter 13: The HeLa Factory ( ) Provides a brief but extensive overview of the growth of research using HeLa cells. HeLa cells proved to be extremely helpful in the efficient and economic testing and production of the Salk polio vaccine. The first cell production factory was created at Tuskegee Institute, growing up to twenty thousand test tubes of HeLa cells each week. But these cells came to be used in so many other areas of research that they began sending cells to any scientist interested in buying them, for ten dollars plus shipping costs. So HeLa, because it was hardy, inexpensive, and quick to grow, became the workhorse for all kinds of cell research, from studying viruses to developing improved methods for growing and shipping cells. The success of HeLa allowed the standardization of methods across the field, allowing important advances in the field, including cloning of single cell lines, determination of the number of chromosomes in the human genome and subsequent study of genetically based diseases. Microbiological Associates launched the first industrial- scale, for- profit cell distribution center, growing HeLa cells and shipping them overnight to scientists all over the world, for less than fifty dollars a shipment, the beginning of a multibillion- dollar industry in cell and tissue culture. Soon people began growing other cell lines, but none grew in quantities like HeLa. Cosmetic and pharmaceutical companies began testing their products on cells, rather than laboratory animals, allowing them to economically examining a wide range of products and diseases. Gey had been slow to publish his work, and began to regret that everyone seemed fixated on HeLa, rather than employing other cell lines, and that HeLa cell distribution was general scientific property. 1. The author notes that Tuskegee Institute, site of the first HeLa production factory, was also home to the notorious Tuskegee Syphilis Study. How are these two projects similar? How are they different? 2. Why is standardization of procedures considered so critical to scientific research? How can that standardization also limit the growth of research? 3. Did Microbiological Associates have the right to begin growing and selling HeLa cells, even though they had played no role in developing them? Chapter 14: Helen Lane ( )

10 10 Although a number of scientists know that a woman named Henrietta Lacks was the source for HeLa cells, George Gey prefers that this not be made public. Journalists begin to express an interest in telling the story behind the HeLa cells, and want to know the name of the person who was the source. A Minneapolis newspaper mistakenly identifies her as Henrietta Lakes. Another journalist working for the NFIP seeks to write another story, stating that he would like to interview members of her family, but Gey and others at Hopkins refuse to provide it, in part because preserving patient confidentiality was beginning to become standard practice. A reporter from Colliers Magazine next contacted Gey about doing this story, and the magazine agreed to publish the story without the patient s name, identifying her as Helen L. The author notes that the story also said that Gey had grown the cultures from cells taken after, rather than before, her death. It appears that Gey created the false name to throw journalists off, and it worked: the patient was identified as Helen Lane or Helen Larson, but not as Henrietta Lacks, so the family remained unaware that her cells were alive. 1. What do you think of journalists trying to find out Henrietta s name and contact her family for their stories? 2. Why did George Gey decline to identify Henrietta Lacks for journalists? 3. Should Gey and his colleagues have informed the Lacks family about the origins of HeLa? Why or why not? Chapter 15: Too Young to Remember ( ) Tells of the difficult conditions the Lacks children grew up in after their mother died. Sonny (4), Deborah (2), and Joe (1) contracted tuberculosis, probably from visiting family members. Lawrence dropped out of school then got drafted and was out of the home for 2 years. Ethel and Galen move into the house to help take care of the children, but Ethel proves to be very strict and harsh in her punishments, especially to Joe, and he grows up angry and mean. In 1959 Lawrence moves into a new house with his girlfriend, Bobbette, and has the other children move in with them when he learns that Ethel has been beating them. Galen has also been molesting Deborah (also called Dale), and her father, Day, and Ethel refuse to believe her complaints. Deborah feels closer to Galen than to others, as he showers her with attention and gifts when he is not hitting or molesting her, and she is unable to break away from him. Relates several stories of times when Deborah resisted. In one, Galen brings Day with him as he forces Deborah into the car and hits her, with no apparent reaction from Day. Bobbette gets enough of this story from Deborah to go to Galen and Ethel s house and scream at them to never touch any of the Lacks children again. Bobbette also tells Deborah to go to school, and to sit up front if she can t hear, as they become aware that Deborah and her brothers have hearing problems. Bobbette also says her that the hearing problems may be because her parents were cousins, and tells her not to mess with her boy cousins in Clover. When Deborah learns that she had a sister, who was deaf and dumb and died in an institution, she

11 11 begins wondering about what her life was like, and what her mother was like. Day and Lawrence tell her very little, and she continues to wonder and worry. 1. Do you get a sense of Deborah s ambivalence in her feelings about Galen? How did that play a role in her molestation? 2. Why was Ethel able to get away with treating the Lacks children as she did for so long? 3. What do you think is going to become of Joe, given the treatment he got as a small child? Chapter 16: Spending Eternity in the Same Place (1999) In Clover, Cootie says that no one ever talked about Henrietta; it was as if she hadn t existed, except for her children and those cells. He advises the author to talk to another cousin, Cliff. She visits him in his decrepit house, and he takes her to see where Henrietta was buried. They go to the home- house, a now deserted and crumbling old slave- time log cabin, and to the Lacks family cemetery behind it. He points out Henrietta s mother s tombstone, and explains that many of the gravesites, including Henrietta s, are identifiable only as indentations in the ground, as a bulldozer cleared out any identifying rocks and markers some years before. He also says that the graveyard contains both black and white Lackses, former slaves and slave- owners, spending eternity in the same place. The author then recounts a partial oral history of the Lacks family, starting with Henrietta s great- great- grandmother and her paternal great- grandfather who took the name Pleasant from his owner. On the maternal side her maternal great- grandfather was a white man, Albert Lacks, one of three brothers who inherited the Lacks plantation. Another brother, Winston, had lived with a former slave, Fannie, but apparently had no children. The third brother, Benjamin Lacks, was referred to as old white granddaddy by most of the black Lackses that Skloot met in her research. Albert left part of his land to five colored heirs, including Henrietta and Day s grandfather, Tommy, and Benjamin left land to seven of his colored heirs. In time that area became known as Lacks Town, and everyone living there had descended from one of those two white men. There were also white Lackses in the community. Skloot visited one of those families, Carlton and Ruby, who denied any relationship to the black Lacks families, believing that the black families just took the Lacks name when they left the plantation. Henrietta s sister, Gladys, confirmed that there was little mixing of the two sides of the family, but said that they were kin. She also showed Skloot a letter from another sister, Lillian, written in the 1980s, which stated that she believed someone was trying to kill her, because white people were coming around asking questions about her life in Clover and about her sister, Henrietta. Skloot learns that Lillian was very light- skinned, and had converted to Puerto Rican because she didn t want to be black any more.

12 12 1. Why did Cliff bring Skloot to the family cemetery? How does race continue to play a role in communities like Clover? 2. Why do the white and colored Lacks families have different beliefs about their interconnections? 3. How does the Lacks family history presented here compare to that of Thomas Jefferson and Sally Hemings? Chapter 17: Illegal, Immoral, and Deplorable ( ) The chapter title refers to a line of research carried out using HeLa cells, conducted by a virologist named Chester Southam beginning in Initially he examined the possibility that either HeLa cells or virus vaccines derived from those cells could accidentally infect humans with cancer, which he did by injecting HeLa cancer cells into a number of cancer patients, telling them only that he was testing their immune systems. When tumors did develop he left some in place to see if their immune systems would reject them or the cancer would spread. He then moved on to examine these effects in healthy patients, using prison inmates as volunteers. He continued his research, injecting over 600 people with cancer cells, including every gynecological surgery patient at one hospital, deceiving them by saying only that he was testing them for cancer (as he wanted to test the idea that healthy individuals would reject the cancer cells more quickly). This research program ended only when three Jewish doctors, familiar with the Nuremburg trials, refused to conduct research on patients without their consent and publicized it. The Nuremburg Code of ethics in medical research, written in response to the Nazi research on Jewish prisoners, insisted on voluntary consent of the patient. But this wasn t law, it was only recommendations. A similar Swedish case had resulted in a doctor being fired, so a suit was brought against Southam s research, and given press coverage. Physicians and researchers protested attempts to regulate their work, and it was clear that many other projects were equally guilty of deceiving patients, but in 1965 the Medical Grievance Committee decided that Southam and his colleagues were guilty of fraud or deceit and unprofessional conduct. The NIH issued guidelines for review of research involving humans, insisting on informed consent. Although scientists said that this meant the end of medical research, it did not. Research flourished, much of it involving HeLa. 1. What were the justifications given for Southam s failure to inform his subjects? 2. What do you think of those justifications? 3. What is your reaction to Southam s comment (p.134) on why he did not inject himself? Chapter 18: Strangest Hybrid ( )

13 13 Begins to introduce some of the problems derived from the widespread use of HeLA cells in research. First, work done during the 1960s on normal and cancer cells seemed to show that normal cell cultures eventually either died or transformed and became cancerous. Second, when cells became cancerous they all behaved the same way, even though they had functioned differently before. One strong likelihood, it seemed, was that all of these transformed cells acted the same way because they had all been contaminated, and that HeLa could be the contaminant. Concerned scientists sought to improve research methods to reduce the possibility of contamination and to establish a reference collection of cell lines, including HeLa, so they could determine what cells might be contaminating others. This work soon demonstrated how careless some researchers had been, misclassifying a number of cell lines. The second part of the chapter details work on somatic cell fusion, or cell sex. Several research groups using these methods had fused HeLa (human cells) with cells from other animals, producing hybrids that helped make important advances in a variety of branches of cell research. However, the popular press stories created fears of half- human, half- mouse (or other animal) hybrids, causing a strong negative public reaction. 1. Why were scientists worried that cell and tissue research was becoming a disaster? What seemed to be going wrong? 2. Why did the Cell Culture Committee want to create a reference collection of cells? Why was it so important that these cells came directly from the original source? 2. Why were scientists working to fuse animal and human cells? 3. Do you approve or not approve of the idea of scientists creating human- animal hybrids for research? Why? Chapter 19: The Most Critical Time on This Earth Is Now ( ) Returns to the story of Deborah Lacks and her brothers. Deborah got pregnant at 16 and tried to drop out of school, but Bobbette refused to let her quit, watching her baby while she went to school and studied. Lawrence and Sonny were doing well, but Joe was always angry and fighting. After he was discharged from the Army for inability to adjust, he returned home and then killed another man in a fight. He fled to Clover to hide, but kept fighting with people there. He returned to Baltimore and turned himself in. After a psychiatric evaluation he was sentenced to 15 (out of a possible 30) years. In prison he began to change, converting to Islam and changing his name to Zakariyya. In the meantime Deborah had married Cheetah, the father of her child, but he was drinking, using and selling drugs, and abusing Deborah. After one more incident she threatened to kill him, but Bobbette talked her out of it and helped her move out while Cheetah was at work. 1. What was Joe trying to say when he wrote the most critical time is now?

14 14 2. How does Deborah s relationship with Cheetah compare to Henrietta s marriage to Day, described in Chapters 2 and 5? How are they similar and how are they different? 3. What shocking news do you think Deborah is about to get, and how well do you think she will handle it? Chapter 20: The HeLa Bomb (1966) A geneticist reported that HeLa cells had contaminated 18 of the most common cell lines used in research, invalidating years of research efforts and apparent advances in cancer research. Among other things, his findings indicate that rather than cells spontaneously transforming into cancer, they were contaminated by HeLa. Scientists began a program of research to identify HeLa cells, an effort that would lead them back to the Lacks family. 1. What was the theory of spontaneous transformation? What significance did Gartler s findings have for this theory? 2. Why was this report referred to as the HeLa Bomb? 3. Why will the effort to develop markers for HeLa contamination require contacting the Lacks family? Chapter 21: Night Doctors (2000) The author finally meets with members of the Lacks family. It becomes clear that they have only vague knowledge of what has been done with HeLa cells, and that they have come to resent and resist questions from outsiders. Like many other African Americans, they share a fear of night doctors, physicians believed to abduct blacks for their research. Skloot points out that these seemingly irrational fears may have a kernel of truth, noting the actions of doctors at Johns Hopkins, looking for genetic markers of criminality, using blood samples from 7000 black children without consent, or knowingly exposing black children to different amounts of lead exposure to assess effects of various forms of lead abatement, and, of course, Henrietta Lacks. Members of the Lacks family assumed that Johns Hopkins had made money from sale of HeLa cells, but they had not received any compensation and were living in poverty without health insurance. They also objected to everyone saying the Henrietta Lacks had donated her cells: they were taken, without asking, and the family was never informed of what had been done with them. 1. Why did the family treat Rebecca Skloot differently from journalists who had come around before? What made her different?

15 15 2. What was the original intent of Johns Hopkins in setting up the hospital? Did the doctors working at the hospital live up to that intent? 3. What were the night doctors, and what impact did their activities have on American society? 4. Why do you think the Lacks family were not notified of what was being done with HeLa cells? 5. Suppose Henrietta Lacks had been your mother or grandmother. Would you be as upset as the Lacks family members? Why or why not? 6. Why were the Lacks family members so angry at the end of this chapter? 7. Do you think the Lacks family should have received some sort of compensation for the development and use of HeLa cells? After reading this chapter, what do you think should be done about their claims? Chapter 22: The Fame She So Richly Deserves ( ) George Gey, developer of the HeLa cells, was diagnosed with inoperable pancreatic cancer. He served as a subject for tests of several experimental treatments, but died within months of his diagnosis. A few months after his death several colleagues reviewed the files on Henrietta Lacks as they prepared to write an article on the history of HeLa in honor of Gey. They realized that the original cancer had been misdiagnosed. Although this wouldn t have changed treatment at the time, it might help explain why it had spread so rapidly. Their article was the first public identification of Henrietta Lacks as the source of HeLa. Shortly after that, increased government funding for a war on cancer became available, along with pressure to find the cancer virus. However, the HeLa contamination of other cell lines became a critical problem in this increased research effort. When it turned out that a supposed cancer virus identified in some Russian cancer patients was actually HeLa contamination, the problem began to be publicized in news stories, but identifying the source of HeLa as Helen Larsen or Lane, as had been reported in the 50s. In 1973 an article was published in one of the premier research journals, establishing at last that the name of the woman whose cells lived on in HeLa was Henrietta Lacks. 1. Would you volunteer to serve as a subject in medical research, as George Gey did? Why or why not? 2. What is the difference between epidermoid carcinoma and adenocarcinoma? Would a correct diagnosis have changed the way Henrietta Lacks was treated? Why was HeLa contamination a problem for research seeking a cancer virus? 3. Why was the finding that HeLa cells had contaminated Russian cancer cell research considered so newsworthy? Part Three: Immortality Chapter 23: It s Alive ( )

16 16 Bobbette Lacks discovers that, unknown to the family, her former mother- in- law s cells are being grown, sold, and used in research. At about the same time scientists trying to solve the contamination problem began to seek out relatives of Henrietta Lacks so they could develop genetic markers to uniquely identify HeLa cells. A researcher contacted the Lacks family, and a chain of confusing miscommunications began. The Lacks family and the investigators were so far apart in terms of education, understanding, and personal or emotional investment in the issues that they might have come from different planets. The researchers wanted samples of blood from Henrietta s husband, Day, and from all their children so that they could do DNA analyses. Day and the Lacks children understood this as the investigators saying that part of Henrietta was still alive, and they needed samples of blood to see if they had the same cancer. The researcher seemed to have assumed that the Lacks family understood much more than they did, and the Lacks family was probably was even more confused because the person who contacted them was a Chinese post- graduate student whose English language skills were limited. There was no attempt to get informed consent because, from the view of the investigators, they were only seeking to develop genetic markers, not engage in long term research with the blood samples. Even though guidelines in existence at time required informed consent in such cases, those guidelines were still in development and had not become legal requirements. When called in for blood samples, Deborah assumed that she was being tested for her mother s cancer, and began to worry that she had cancer or possibly that the doctors were going to give her cancer. When she went to the hospital for a second blood sample she tried to find out what had happened to her mother and what part of her was still alive. The principal investigator, Victor McKusick, told her about many of the important research studies that had been done using HeLa cells, and gave her a textbook on genetics that he had written, saying that it would tell her everything she needed to know. Deborah, however, was unable to understand the textbook, and only noted that it contained a photograph of her mother that she had never seen. 1. How could McKusick and his investigators have explained what they were doing in a way that made sense to the Lacks family? 2. Do you think McKusick and his colleagues were concerned about making certain the Lacks family understood what they were doing? 3. Do you think the investigators treated the Lacks family ethically? If not, do you think it was intentional or a misunderstanding? 4. What would you have done differently if you were Dr. McKusik? If you were Susan Hsu? 5. How would you feel if you discovered that investigators had taken cells or tissues from some member of your family without consent? 6. How are ethical standards for research on humans today treated differently than they were in the 1970s?

17 17 7. Do you think that an ethical standards review board could or should have anticipated the problems in communications between the Lacks family and the investigators? 8. Do you think the investigators feel today that they did anything wrong back then? Chapter 25: Least They Can Do (1975) Michael Rogers, a writer for Rolling Stone magazine, interviews the Lacks family for a story on Henrietta Lacks and HeLa. They asked him many questions about the cells and the blood samples that had been taken from them, and he tried to explain as well as he could that this didn t mean that they were immortal, or that they would get cancer. When the article was published they learned that HeLa cells were being sold by various companies, and the Lacks brothers became convinced that Johns Hopkins had stolen their mother s cells and made millions off them. Skloot notes that George Gey and Hopkins apparently didn t make any money from HeLa. However, many other cell banks and biotech companies have, although it is difficult to determine how much. While the men were trying to get money from Johns Hopkins, Deborah was more interested in learning more about her mother. Her lack of training made this difficult; she often misunderstood research, thinking that her mother was experiencing things that were done to samples of HeLa cells. The Rolling Stone article started a flurry of interest in HeLa, because this was in an era when the civil rights movement and awareness of injustices done toward blacks was quite high, so the central role of a black woman s cells in cancer research was particularly noteworthy. Investigators had also published a report on genetic markers for HeLa and for other members of the Lacks family information that would be illegal to publish today but the Lacks family was unaware of this, or that it might have violated their rights. They also didn t know that a white man was beginning legal proceedings in a case very similar to theirs. 1. Do you think that Johns Hopkins should be penalized or required to reimburse the Lacks family for using Henrietta Lacks tissue samples to develop and distribute HeLa? 2. Do you think the Lacks family would be justified in seeking payment from the various companies that had sold HeLa cells? 3. The Science article by McKusick and Hsu, published in 1976, provided identifying genetic information about members of the Lacks family. Should that have been done? Why is this illegal today? 4. What are the interests and conflicts that you see between the Lacks family, Johns Hopkins, the biotech firms selling HeLa, and the general scientific community? Given what you have read so far, how would you resolve those conflicts? Chapter 25: Who Told You You Could Sell My Spleen? ( )

18 18 Provides a brief overview of the development of law regarding use of individual s cells and tissues in medical research during this time period. In one case, John Moore s spleen was removed by David Golde, a cancer researcher, who used it to develop the Mo cell line. During the early stages of this research Moore was asked to sign consent forms that gave away his rights to any cell lines that may have been developed from blood or bone marrow obtained from him. He first agreed, fearing the consequences of refusal, but then declined and sent the form to a lawyer, who discovered that Golde had used Moore s spleen to develop and patent a commercially valuable cell line. The question of whether or not biological products could be patented had been addressed only a few years before, when a scientist was granted a patent for an oil- consuming bacteria that he had developed. This opened the door for others to patent other living things, including cell lines, which didn t occur naturally outside the body. And patenting cell lines did not require informed consent pr permission from the source. Moore s lawsuit said that his cells produced rare proteins that pharmaceutical companies could use, and contained a rare virus that researchers hoped could be used to create an AIDS vaccine, thus it was commercially valuable, and Golde s patent prevented Moore from benefitting from this on his own. In an earlier case another man had learned that his blood was potentially valuable, as it contained high levels of hepatitis B antibodies, so he had begun selling it to researchers (but also granting rights to one researcher to use his serum to ultimately develop a hepatitis B vaccine). Moore argued that Golde and UCLA had deceived him and used his body for research without his consent, claimed property rights over his own tissues, and sued Golde for stealing them. Several related lawsuits were also in the works at that time, and the issue of who had rights to a patients tissues was being hotly debated. A first verdict went against Moore, with the judge deciding that, as other cell lines (like HeLa) had been developed without lawsuits, Moore s claim was unusual and unjustified. Moore appealed, and won at the next level, with the Court of Appeals stating, a patient must have the ultimate power to control what becomes of his or her tissues. But Golde appealed to the California Supreme Court, which issued the definitive statement on this issue: when tissues are removed from your body and left in a doctor s office or lab, with or without your consent, you lose any claim on them. In Moore s case, the cells had been transformed and were now the product of Golde s ingenuity and inventive effort. The court added that researchers should disclose financial interests in patient tissues but argued that ruling in Moore s favor would hinder research by restricting access to raw materials. Skloot notes that the Lacks family was unaware of this debate, despite media coverage, and continued to believe that johns Hopkins had stolen their mother s cells and owed them millions of dollars. 1. What is the author s position on the issue of ownership of tissues used in medical research? What evidence did you use to make that judgment? 2. What is your own position on this issue? How do you feel about the decisions by the Court of Appeals and the California Supreme Court?

19 19 3. Should individuals receive financial compensation if their tissues are employed to develop a biological product, or should that go to the person who developed the product? 4. If your blood had been used to create a new vaccine, would you be satisfied knowing that others would benefit from your contribution, or would you feel that you should be financially rewarded? How much do you think you should get, and how much should the developers get? Chapter 26: Breach of Privacy ( ) Returns to the story of the Lacks family. Deborah has continued to work in various jobs and has gotten remarried; Zakariyya was out of prison, but still having problems holding jobs, earning some money by serving as a subject in medical research; Sonny was in jail for narcotics trafficking; and Alfred, Deborah s son, appears to be taking the same path as his uncles, jailed for minor offenses and going AWOL from the Marines, until Deborah had to kick him out. Deborah got a copy of a book that related the story of HeLa contamination, but provided considerable information about Henrietta Lacks and her medical conditions and treatment. The details of this were very distressing to Deborah, and everyone wondered how this reporter had been able to get Henrietta s medical records. When Skloot contacted him years later, his memory was vague, and Howard Jones denied that either he or Victor McKusick had given them to him. This seemed to be a clear violation of patient confidentiality, a well- established ethical principle, but not at that time a violation of law in Maryland. 1. What impression of the Lacks family does Skloot create in this chapter? 2. Do you think that federal rules regarding patient confidentiality are necessary? Why? 3. Do you think Michael Gold should have published the information on Henrietta Lacks without receiving permission from her family? Did he make enough of an effort to contact them? Chapter 27: The Secret of Immortality ( ) Examines several perspectives on HeLa cells that attempt to explain why they seem to be different from and stronger than other cell lines, including both scientific explanations and anecdotal observations from Henrietta s family. A German researcher found that HeLa contained multiple copies of HPV- 18 (human papilloma virus, which causes cervical cancer). This virus essentially turned off a tumor suppressor gene, but that still does not explain why HeLa is so virulent. Other researchers managed to infect HeLa with HIV by inserting a DNA sequence from a blood cell into HeLa cells, allowing them to determine how HIV infected a cell. This research was challenged by a lawsuit to halt it on the grounds that it could potentially lead to the hazardous widespread dissemination of HIV. This case was

20 20 dismissed. Others argued that HeLa cells had changed so much, through incremental changes in each new generation of cells, that it had become a new species, genetically different from Henrietta Lacks and no longer human, but this argument has not gathered much attention. Another line of research compared normal and cancer cells, to explain why cancers could continue to grow indefinitely. Normal cells are subject to the Hayflick Limit; they stop dividing and begin to die after about 50 cycles, apparently because their telomeres (bits of DNA at the end of each chromosome) shorten with each division, until they are too short to allow division. Cancerous cells like HeLa, in contrast, contain an enzyme called telomerase, which rebuilds the telomeres, so that they can continue to reproduce. HeLa cells were simply able to outlive and outgrow any other cells they encountered. 1. What role do telomeres play in determining how many times a cell can divide? 2. What is the Hayflick Limit? 3. Should research manipulating DNA be allowed? Why or why not? Chapter 28: After London ( ) The BBC makes a documentary about Henrietta Lacks, interviewing many of the family members. Raymond Pattillo organized the first HeLa Cancer Control Symposium at Morehouse College, got the city of Atlanta to declare September 11 as Henrietta Lacks Day, and invited the Lacks family to be honored at the meetings. Courtney Speed and Barbara Wyche sought to memorialize Henrietta Lacks at a museum in Turner Station, and got the state of Maryland and the U.S. House to recognize Henrietta s contributions to science. Deborah and the Lacks family began to feel the good and bad sides of this recognition: proud of her mother s contributions, but also coming to fear that others were threatening to take her mother s things from her, and resentful that money was raised for these activities, but nothing for the Lacks family to pay their own medical bills. Wyche wrote to Johns Hopkins, noting some of the ethical issues in their handling of the HeLa cell line. Hopkins responded, noting that, although standards had changed since then, everything done with regard to the collection and distribution of HeLa cells was consistent with medical practice at the time, and Hopkins had never profited commercially from them. Also relates the story of Sir Lord Keenan Kester Colfield, who contacted the Lacks family and sought to represent them in legal actions, including copyrighting the Henrietta Lacks name and suing Johns Hopkins for malpractice, telling them he would only take a percentage of the any awards they won. A lawyer for Johns Hopkins determined that he was a con man, with a long record of fraud and frivolous lawsuits, and sought to protect the Lacks family by getting them to forbid Colfield access to the medical records. Colfield then filed suit against the Lacks family members, Johns Hopkins, and others he felt were connected to them. His legal actions started piling up, scaring Deborah and Courtney Speed; Johns Hopkins represented them and eventually the case was dismissed. But this