The Immortal Life of Henrietta Lacks By Rebecca

The Immortal Life of Henrietta Lacks By Rebecca Skloot ELA Grade 6

Compelling Question: Explain how ethics, race, medicine, and scientific discovery impacted Henrietta Lacks and her family.

Table of Contents Chapter One: Looking at the Literature 2 Chapter Two: The Life of Henrietta 19 Chapter One: Looking at the Literature Learning Outcome: - Students will be able to determine central ideas or themes. Chapter Three: Research and Medicine 23 ● He. La Cells ● Ethical issues in Biomedical Research Culminating Questions 31 Ab au out Sk thor the loo : R eb t e Culminating Activity 32 Glossary 33 References 1 2 cc a

The Immortal Life: A Snapshot Henrietta Lacks was a young 31 yearold woman with 5 children that she loved dearly when the tumor in her cervix was discovered for the first time. Soon after Henrietta would begin treatment for an aggressive form of cervical cancer in the colored ward of the Johns Hopkins Hospital in Baltimore. While she was being treated, a sample of her cancer cells were taken without her knowledge, which was typical practice for that time. As it turns out, the doctor who studied Henrietta’s cells discovered that her cells were unlike any cells he had ever seen – they were immortal. He. La cells became one the most valuable tools in scientific medicine, and yet Henrietta would never have any idea, and for some time, her family wasn’t aware either. By the 1970 s, however, her name was publicly revealed and her family found out. Several years later, in 1988 a woman named Rebecca Skloot heard about a woman named Henrietta and her cells in her college biology class. From that point on, Rebecca was determined to find out what else there was to the story. 3 A couple of years later, she came across the papers from the first He. La Cancer Control Symposium, which took place in Atlanta in 1996. At the conference, she persuaded the conference's organizer, Roland Pattillo, to put her in touch with Henrietta's family. Pattillo agrees, he warns her to be careful as the family has suffered greatly as a result of He. La and the way in which they have been treated by some members of the scientific community. Skloot's call to Pattillo was the beginning of a decade of research in which she becomes determined to give a voice to Henrietta. Skloot worked hard to gain the trust of the Lacks family. They had a tough time believing that Skloot had their best interest at heart because they were angry and distressed about He. La and the way in which they had been treated in the past. Over several years, Skloot bonds with and forms a trusting relationship with the Lacks family, who begin to realize that she is not trying to exploit them in the slightest. She becomes particularly close to Henrietta's daughter, Deborah, who desperately wants to learn everything she can about the mother who died when she was just a toddler. Deborah also wants her mother's story to be told. The Immortal Life of Henrietta Lacks is an overlap between the Lacks family and the world of scientific research that allows Skloot to engage her readers in various fascinating debates about scientific ethics, racism and poverty 4

Important Topics to Consider. . . Racial Inequality During Henrietta's time, racial inequity and segregation existed in the medical field, just as in the other public sectors. African-American patients, doctors and nurses were typically restricted to providing and receiving medical treatment in separate hospitals. When Henrietta felt sick, Johns Hopkins Hospital was her only choice for a hospital, since it was the only one in proximity that treated black patients. Even in the hospital, Henrietta needed to go to separate waiting room and wards for the colored people. . Another primary example of racial inequality in this story is when Henrietta's first daughter, Elsie, was treated. Elsie was considered "deaf and dumb" and sent to the Hospital for the Negro Insane and died there at the age of sixteen. Deborah Lacks and Rebecca Skloot found out later that the conditions in the hospital in the 1950 s were abysmal, and the cause of Elsie's death remained unknown. 5 Family The importance of family is a recurring message throughout the book. Henrietta’s family dealt with major difficulties such, as poverty, could not afford health care, and most of all, living most of their lives, not knowing who their mother was, or about the cells that were taken from her body. While they didn’t always see eye to eye, they always supported one another in the journey to discover who her mother was, and the legacy she left behind. BLOG BREAK! Go to our class blog and post about your thoughts and connections to Henrietta Lacks. 6

Henrietta and Day’s Children Click here to watch a video about informed consent. Lawrence Lacks- Was their first born Elsie Lacks- Was the second born David Jr. “Sonny” Lacks- The third child Deborah “Dale” Lacks- The fourth child Zakariyya Bari Abdul Rahman(born Joe Lacks)The fifth child. Immediate Family Eliza Lacks Pleasant- Henrietta’s mother Gladys Lacks- Henrietta’s sister Johnny Pleasant- Henrietta’s father Tommy Lacks- Henrietta’s grandfather 9 Ethics - Informed Consent The primary ethical issue in The Immortal life of Henrietta Lacks is found in the murky application of informed consent. The idea of informed consent originated in Ancient Greece. In his article regarding the history of informed consent, Dr. Pete Murray states that informed consent is, “patient participation in decision making for medical treatment was considered undesirable. ” Though informed consent was not universally applied to the same degree, it reared its head again in 1914 with the case of Schloendorff v. Society of New York Hospital. In this case, Justice Cardozo ruled “Every human being of adult years and sound mind has a right to determine what should be done to his body. ” Despite the clarity of informed consent upheld in the courtroom, the cultural norms of the 1950 s’ were much different from present day. 10

Different Perspectives. . . The social treatment of African Americans played an integral role in their medical care; specifically in the Tuskegee syphilis study and the medical treatment of Henrietta Lacks. During Henrietta’s treatment, the Nuremberg Code of Ethics was fresh in the mind of scientists, but the quest for scientific advancement proved to outweigh their moral obligation to the patient’s right of consent. Despite the Nuremberg Code of Ethics firmly announced, it was not necessarily widely accepted and practiced by doctors around the world. In today’s medical community we have had the privilege of hindsight, and can attempt to learn from the medical malpractice of the past. Contrary to the 1950 s’ application of informed consent, today according to the FDA 21 CFR Parts 50, 312, and 812, “applicable clinical trials initiated on or after March 7, 2012, informed consent documents must be in compliance with the new requirement in 21 CFR § 50. 25(c) and include a specific statement that refers to the trial’s description. ” Many of our ethical practices such as beneficence and informed consent have more strictly been applied in modern medicine. 11 Deborah One important voice to note in The Immortal Life of Henrietta Lacks is of Henrietta’s daughter, Deborah’s comments and actions throughout the book, reveal 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. Deborah believed Henrietta’s spirit lived on in her cells, controlling the life of anyone who crossed its path. As she coasted to a more mature 30 years old, she shifted away from the mentality of much of the family, which partly was to try to make money off of the He. La cells from Johns Hopkins or anyone that would offer it. Their endeavor included handing out pamphlets and other reading material explaining their version of the story of Henrietta. 12

Deborah bought a dictionary, a notebook and some science textbooks and began taking notes and making a real effort to learn more about cells. She educated herself and almost used it as a coping mechanism, while writing her thoughts down in her journal next to important lines from the textbook. Deborah, for the longest time, is convinced that scientists were trying to kill her family in order to obtain their cells. That was clearly not the case; most scientists actually had honest intentions. Once Henrietta’s story became more known, many of them believed that Deborah and the rest of the Lacks family deserved to have that thoroughly explained to them in order to acquire complete understanding. Rebecca Obviously, the author, Rebecca Skloot’s voice is very present throughout the whole book. From the start, Skloot makes it clear she believes justice must be served for Henrietta and the Lacks family. Skloot notes that these cells can be found research facilities all over the globe, but other than on rare occasions, there is rarely much discussion of the person behind these cells (or in fact, behind any cells used in research). Rebecca started the book with a bit of fear because it would have been easy for her to sensationalize the history of the person behind these cells. But in fact, Skloot is meticulous in researching the facts behind the story and in trying to explain what happened in the context of the times (e. g. , she does a good job of describing how concepts of "informed consent" have changed over time). Instead of simply portraying scientists as evil or blaming them for "stealing" He. La cells, Skloot portrays scientists as they really are - frequently well intentioned but a bit naive at times about the repercussions of what they are doing. Even though she narrates the entire book, she remains completely neutral in the throughout the whole narrative. Henrietta’s family vs. Johns Hopkins There are two types of conflict that are present in this book. The first is the internal conflict that Henrietta’s family dealt with in thinking that John’s Hopkins had been profiting of their mother’s cells after all these years. They were angry that they had been deceived and felt that they were deserving of the profits as Henrietta’s successors. 14

However, this conflict came to a resolution when it became clear to Henrietta’s family, specifically her children Deborah and Zakariyya, that John’s Hopkins didn’t make a cent, let alone millions, off of their mother’s cells, like they had originally thought. This seemed to be a turning point for Henrietta’s family. Their frustration and anger built up over the years slowly started to dwindle and morphed into a curiosity to learn and be informed about their mother’s immortal cells. Deborah vs. Rebecca There is also an external conflict between Deborah and Rebecca. As Skloot and Deborah embark on their journey to discover more about Henrietta and her cells, Skloot does everything she can to help foster trust between Deborah and herself. Somedays, Deborah would be open-minded and receptive to the thoughts and suggestions that Rebecca had to offer. But on other days, Deborah would flip a switch, becoming paranoid and suspicious that Rebecca had bad intentions. 15 Fortunately, Rebecca was always very patient with Deborah, calmly reminding her that she worked for herself and had no intention of making any money or exposing her family negatively. Still, Deborah seemed hesitant around Rebecca, she wouldn’t even allow Rebecca to ride in the same car when they went on trips. This particular conflict came to a resolution when Deborah physically aggressed towards Rebecca and Rebecca lost her patience, jerked free of Deborah’s grip and yelled back at her. From that point on, the tension eased, and Deborah was finally able to trust Rebecca. Comprehension Questions 1. 2. 3. 4. 5. What are the major themes of this book? Briefly describe each theme. What parts of this story might have been different if Henrietta and her family had been white? In your own words, describe the plot of the book. Based on the information you have been given, who is the narrator? Write a letter as Deborah to her mother, Henrietta. In the letter, indicate how Deborah feels towards her mother in her absence and how she intends on doing her mother justice. 16

cancer check up can’t afford white and rich get it my mother was black poor people don’t have the money to pay for it mad yes I am mad we were used by taking our blood and lied to We had to pay for our own medical, can you relieve that. John Hopkins Hospital and all other places, that has my mother cells, don’ t give her Nothing. -Deborah Lacks BLOG BREAK!pg. 280 Go to our class blog and answer the corresponding questions to this poem. 17 click here to listen to a creative song about Henrietta Lacks Then…. As you watch the video, listen carefully and write down as many facts as you can about Henrietta and her life. 18

Chapter Two: The Life of Henrietta Lacks Learning Outcome: - Students will be able to identify who Henrietta Lacks is and provide details from the text to support their understanding. Henrietta Lacks was an African American woman born in Roanoke, Virginia on August 1920. Henrietta grew up on a farm and lived with her grandfather. Every morning Henrietta and her cousin Day woke up really early to milk the cows and feed the chickens, hogs, and horses. The two of them tended a garden filled with corn, peanuts, and greens, then headed to the tobacco fields with their cousins. Henrietta spent most of her young life planting tobacco behind mule-drawn plows. 19 When Henrietta and her cousin Day grew older they then got married and continued to work on the tobacco fields where they were struggling with work because of tobacco companies supplying free cigarettes to soldiers. Later Henrietta and Day moved to Turner Station to start a new life where her husband Day worked at the largest steel plant in the world. Later Henrietta and Day had 5 children. Lawrence, Elsie, David “Sonny”, Deborah, Joseph, and Rahman. In 1951 Henrietta showed up at Johns Hopkins hospital which was one of the only hospitals that would treat black patients complaining about abdominal bleeding. One of the doctors at the hospital named Te. Linde decided to operate on Henrietta because they had suspected that Henrietta may have cervical cancer. Te. Linde and another doctor Jones developed a theory about cervical cancer that, if correct, could save lives of millions of women. 20

Henrietta and her family were trusting the hospital to treat her accurately but never questioned their thoughts or ideas about Henrietta’s health because black patients felt lucky to even be seen by a doctor during that era. Te. Linde often used patients from the public wards of the hospital for research without their knowledge. Henrietta knew that Hopkins was the only place for her to get treated that she placed all her trust in the doctors at this hospital to treat her accurately. On February 5 th, 1951 Jones got Henrietta's biopsy report back from the lab and told her that the cancer was malignant. Henrietta told her husband Day that she would need to go back to the hospital to do some more tests and to get some medicine. The doctors then checked her urine, blood, and lungs, along with sticking tubes in her bladder and nose. Several studies have showed that a treatment using radium would be beneficial to her treatment and safer than surgery. On October 4 th, 1951 Henrietta died of cervical cancer at the age of 31. After Henrietta's death the He. La strain revolutionized medical research. During much of this outbreak of research of Henrietta's cells, her family was unaware of how much their mother and wife contributed to medical research. 21 The Lacks family learned about the He. La cells in the 1970 s. In 1973, a scientist contacted family members, seeking blood samples and other genetic materials. Inquiries from the family regarding the use of He. La cells, and publications that included their own genetic information, were largely ignored. The case gained new visibility in 1998, when the BBC screened an awardwinning documentary on Lacks and He. La. Comprehension Questions 1. 2. 3. 4. Describe the character traits of Henrietta Lacks. Why did Henrietta go to John Hopkins Hospital rather than to another hospital? How did the general public’s respectful opinion of doctors during the early 1900 s impact the interaction between Henrietta and her family and the doctors of Johns Hopkins? Do you think Henrietta would have provided consent for her cells to be taken and used in the ways that were? Write an essay stating your opinion and supporting it with convincing reasons. Be sure to explain your reasons in detail. Activity Watch this video and post a blog about what her doctors discovered about her abdominal pain. Click here to watch the 22 video.

Chapter Three: Research and Medicine Learning Outcomes: - Students will be able to identify what He. La cells were and the impact that they had on the public's overall health. Students will be able to identify the difference between medical practice in the 1900’S and 2000’s. He. La Cells: Henrietta went into her doctor’s office to receive treatment on the tumor that was growing inside her cervix. However, what she didn’t know is that he was also collecting tissue samples from her cervix to be given to Dr. George Gey, the head of tissue-culture research at Johns Hopkins. Once given to Dr. Gey, Henrietta’s cells would be begin the cell culture process. In technical terms, when cells undergo the culture process it means that the cells are being grown under controlled conditions. Dr. Gey cultured Henrietta’s cells with the help of his lab assistant Mary Kubicek, just like they had done with the countless amounts of other cell samples in Gey’s lab, most of which didn’t live long. 23 However, to their surprise, merely a couple days later they found that Henrietta’s cells, labeled “He. La” after the first two initials in her name, were multiplying by the millions. In fact, He. La cells grew twenty times faster than normal cells. It was at that point that Dr. Gey had realized they he may have found and grown the first immortal human cells. In other words, the He. La cells can divide an unlimited number of times when cultured in a lab. Henrietta’s cells were so valuable because they allowed scientists to perform experiments that would have been impossible to do with living human beings. He. La cells also produced much faster than normal cells, and thus produced results faster. In the early nineties, a scientist at Yale had used He. La cells to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres. The presence of telomerase indicated that cells could keep regenerating their telomeres indefinitely. This explained the mechanics behind He. La’s immortal nature. Essentially, the telomerase constantly regrew themselves so that they never died. 24

Once He. La cells began to develop their reputation, Dr. Gey gave the cells to any scientist that requested them if they planned to use them for the benefit of science. During that time in history, permission from the cell ‘donor’ or their family was not required. As time went on and the demand for He. La cells grew, they became instrumental tools in endless amounts of medical research. For instance, He. La cells were used to test the first polio vaccine, to test the effects of radiation and toxic substances, gene mapping, cloning, cancer research, AIDS research, and much more. Much of our understanding of basic cell physiology and cancer biology is due to He. La cell research. By 1952, He. La cells were travelling by planes, trains, and automobiles (and pack mule) all over the world. He. La cells eventually even went into space. Within a few years companies began selling He. La cells and the media required to grow them. This led to standardization and optimization of cell culture and allowed scientists quick and cheap access to He. La cells. Eventually, it launched the cell culture industry, which today is a multibillion dollar business. 25 There is no record of Hopkins or Dr. Gey accepting money for He. La cells, but many for-profit cell banks and biotech companies have. The American Type Culture Collection, a nonprofit whose funds go mainly toward maintaining and providing pure cultures for science has been selling He. La cells since the sixties. At the time when The Immortal Life of Henrietta Lacks was published, they were selling He. La cells for $256 per vial. Click here to watch a video of He. La cells dividing BLOG BREAK! Go to our class blog and respond the questions regarding He. La Cells. 26

Ethical Issues In Biomedical Research: There are several things that come up when taking a closer look at the biomedical research that was done during the 1950 s-1970 s versus now. At the time of He. La cell dissemination informed consent was at the forefront of discussion, whereas in our current era we have struggled with two core elements of ethics in biomedical research: privacy and managing conflicts of interest. In 1996 the HIPAA privacy rule was enacted establishing nationwide security standards and safeguards for the use of electronic healthcare information as well as the creation of privacy standards for protected health information. HIPAA went through various iterations prior to its evolution into its current version issued in 2002. Similar to the response that occurred in reaction to federal policy outlining requirements for informed consent, researchers of today have oft complained that HIPAA has been an impediment to scientific progress and research. The latest HIPAA debate has revolved around federal requirements that medical providers and insurers notify patients in the event of discovering a privacy breach. Multiple examples of such privacy breaches have been described in the media ranging from stolen laptops to identity theft. 27 The story of Henrietta Lacks was interesting from a historical perspective. It took decades to sort through informed consent. In contrast, the debates over health privacy and conflict of interest are still in their infancy. The fact that remains similar, however, is that the underprivileged, and medically “illiterate” are far more likely to be the subject of ethical violations than others— even in today’s era. In the case of the Lacks family, poor communication and lack of confidence on the part of the medical establishment that the family would be able to grasp the content of the discussion, resulted in a lack of informed consent. Writing Activity Create a graphic organizer that indicates the differences and similarities between medical research practices in the 1900’s and in the 2000’s 28 click here to see examples of graphic organizers

Comprehension Questions The Affordable Care Act: Medical Assistance for Henrietta’s Family? In plain terms, the Affordable Care Act is a law enacted to ensure that all Americans have access to affordable health insurance. It does this by offering consumers discounts (known as tax credits) on government-sponsored health insurance plans, and by expanding the Medicaid assistance program to include more people who don't have it in their budgets to pay for health care. Henrietta’s family did not reap any profits from the sales of the He. La cells. In fact, her family can’t even afford health insurance. With that being said, perhaps this law would be beneficial to Henrietta and her family… Connection between science and literature: There are several occurrences throughout the book in which Skloot uses figurative language to describe cells. For instance, Skloot compares cells to a fried egg under the lense of microscope. She also compares the cells’ cytoplasms to factories that work 24 hours a day 7 days a week that mass produce the energy to keep the cells running. Skloot carefully crafts her description of the cells in such a way that biology and literature successfully overlap. 29 1. 2. 3. 4. Henrietta Lacks died in 1951, but her cancer cells are still alive today. Do you think they carry some essence of Henrietta? How might this story have changed if Dr. George Gey was the narrator? How might the point of view be different? Making healthcare affordable to all Americans has been a recent political focus. What does the story of Henrietta Lacks and her family add to this debate? Write a either a Haiku, cinquain or free verse poem about He. La cells. Click here to watch a video on the Affordable Care Act Dr. George Gey’s Obituary 30

Culminating Questions Directions: Post your responses to the culminating questions on our class blog. 1. 2. 3. 4. What did you learn about ethics, race, and medicine after investigating Henrietta Lacks in this ebook? What did you learn about the connection between Henrietta Lacks and the He. La cells? Write a short description of He. La cells using one metaphor and one simile. What are the differences between the ways in which medicine was practiced during Henrietta’s time and the ways in which medicine is practiced today? What is the genre of The Immortal Life of Henrietta Lacks? Provide 3 pieces of evidence from the text to support your answer. 31 Culminating Activity First: Watch the BBC documentary https: //www. youtube. com/watch? v=C 0 l. Mrp_y. Sg 8 Then: Pretend you are Journalist writing an article for the “New York Times” in the year 2030. In your article, you are to write about how important Henrietta Lacks was to scientific research and what that means for the people of 2030. (Hint: this also means making predictions based on what you have learned). At the end of your article, you are to add a critique of the book that includes your personal critique of the book and the discussion of 4 literary elements. Be sure to include: Brief history of Henrietta - who she was and where she came from (ie: family background, where she grew up, ethnicity, etc. ) A description of He. La cells and why they were important to biomedical research. Ethical Issues surrounding Henrietta’s story. Photos, videos, or anything else you feel is relevant. Click here to see examples of articles. 32

Glossary Biomedical Research - Also known as medical research. The basic research, applied research, or translational research conducted to aid and support the development body of knowledge in the field of medicine. Cells- The basic structural, functional, and biological unit of all known living organisms. Cells are the smallest unit of life that can replicate independently, and are often called the "building blocks of life". Character Traits - all the aspects of a person's behavior and attitudes that make up that person's personality. External Conflict - A struggle between a character and an outside force. Ethical- Pertaining to or dealing with morals or the principles of morality; pertaining to right and wrong in conduct. Being in accordance with the rules or standards for right conduct or practice, especially the standards of a profession 33 He. La Cells- The He. La cell line is named after Henrietta Lacks, Researchers used cells sampled from that tumor to create the He. La cell line, the first and now by far the most commonly used in cell biology laboratories. Immortal. Living forever, never dying Internal Conflict - A struggle that takes place within the character’s own mind. Polio Virus- Polio, or poliomyelitis: is a highly contagious viral infection that can lead to paralysis, breathing problems, or even death. Polio can be classified as either symptomatic or asymptomatic. About 95% of all cases display no symptoms (asymptomatic polio), and between 4% and 8% of cases display symptoms (symptomatic polio). Sensationalize - in a way that provokes public interest and excitement, at the expense of accuracy. Telomeres - a compound structure at the end of a chromosome Telomerase - an enzyme that adds nucleotides to telomeres, especially in cancer cells. Vaccine - a substance used to stimulate the production of antibodies and provide immunity against one or several diseases, prepared from the causative agent of a disease, its products, or a synthetic substitute, treated to act as an antigen without inducing the 34 disease.

References Skloot, R. (2010). The immortal life of Henrietta Lacks. New York: Crown. New York Times (n. d. ). Retrieved February 18, 2015, from http: //www. nytimes. com/most-popular Classroom Resources. (n. d. ). Retrieved February 18, 2015, from http: //www. eduplace. com/graphicorganizer/ Dr. Dialogue. (n. d. ). Retrieved February 24, 2015, from http: //www. drdialogue. com/2011/05/conflict-of-interestand-privacy-are. html Ethics of Informed Consent and the Legacy of Henrietta Lacks. (n. d. ). Retrieved February 18, 2015, from http: //rabinmartin. com/insight/ethics-of-informed-consentand-the-legacy-of-henrietta-lacks/ Hanks, J. , & Frederick, B. (1975). Obituary: Dr. George Otto Gey 1899− 1970. The Journal of Cancer Research. 35 Rebecca Skloot Journalist, Teacher, Author of The Immortal Life of Henrietta Lacks. (n. d. ). Retrieved February 24, 2015, from http: //rebeccaskloot. com/theimmortal-life/ Rebecca Skloot Journalist, Teacher, Author of The Immortal Life of Henrietta Lacks. (n. d. ). Retrieved February 20, 2015, from http: //rebeccaskloot. com/about/bio/ The Immortal Life of Henrietta Lacks - Super. Summary Study Guide. (n. d. ). Retrieved February 20, 2015, from http: //www. scribd. com/doc/172539196/The-Immortal. Life-of-Henrietta-Lacks-Super. Summary-Study-Guide The Way of All Flesh by Adam Curtis. (n. d. ). Retrieved February 20, 2015, from https: //www. youtube. com/watch? v=C 0 l. Mrp_y. Sg 8 Where Biology and Literature Intersect: "The Immortal Life of Henrietta Lacks" : Vocabulary. com. (n. d. ). Retrieved February 20, 2015, from http: //www. vocabulary. com/articles/lessons/wherebiology-and-literature-intersect-the-immortal-life-ofhenrietta-lacks/ 36