The Immortal Life of Henrietta Lacks | Study Guide

Rebecca Skloot

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The Immortal Life of Henrietta Lacks | Main Ideas


A Family's Search for Information

Skloot could not have written The Immortal Life of Henrietta Lacks without the Lacks family's cooperation and assistance. Skloot worked particularly closely with Deborah Lacks to research Henrietta and Elsie; in doing so she discovered more about the family than she would have by interviewing them one by one and putting together the information by herself.

Skloot also tells the story of Henrietta's family and the relationships between family members. Henrietta grew up on a tobacco farm, daughter of a very poor family, and because she was part of the family network of farm workers, stopped going to school after sixth grade. Her husband, David, nicknamed Day, stopped after fourth grade. The family connections then led to Day going up to Turner Station to work in the steel mills, and Henrietta's children staying in the Baltimore area. They are a close-knit family, as the various Lacks cousins and Henrietta's sister were during the time Henrietta was alive. The family nearly fell apart because of Ethel's abuse of Henrietta's children after her death, and the entire family felt the reverberations of her violence, especially Zakariyya. But when Skloot came to meet with Sonny Lacks and was shuttled to Lawrence Lacks and his wife, Bobbette, to be "tested" for trustworthiness, the brothers stuck together to begin the journey of creating this book, first making sure Skloot was honest and really had their best interests in mind, and then cooperating with Skloot to eventually put her in touch with Deborah Lacks, their sister. The deception inflicted on the family and Skloot's determination to bring all of it to light in her book brought the Lacks children, grandchildren, and cousins together as a unified front, from Clover, Virginia, to Turner Station, Maryland, working with Skloot to reveal the truth about the HeLa cells and Henrietta's life. Members of the Lacks family continue to monitor the use of the genome revealed in the DNA of the HeLa cells.

The concept of family is also the main driving force behind Deborah Lacks's determination to do research alongside Skloot rather than have Skloot do it by herself. Deborah wanted to see her mother's cells, and she wanted to have questions about her mother answered. She wanted to know what kind of a person her mother was, and she also wanted to know what happened to her sister, Elsie. The search for information and the results, especially the revelations about Elsie's treatment at Crownsville, had a significant effect on Deborah's health, and her cousin, Gary Lacks, stepped in to help her center herself as she worked through the emotional impact of what she had learned. James Pullum, Deborah's then-husband, even brought Skloot to church with the family and asked her to talk about Henrietta's cells in front of the congregation. In finding out about the family members she had lost, Deborah became closer to her remaining family members, particularly Zakariyya, who turned over a new leaf after seeing his mother's cells.

Medical Mistreatment Because of Racism and Poverty

The daughter of sharecroppers and descendant of slaves, Henrietta grew up in poverty, living in a four-room former slave cabin and giving birth to her own children there, on the floor of the "home-house." When Henrietta sought care for the pain in her womb, doctors dismissed her concerns, and eventually the pain was blamed on a pregnancy and gonorrhea. Henrietta, whose family and work situation required her to leave school to work in the tobacco fields after sixth grade, did not question her doctors, although she had a sense something was not right, even after being told she was fine. Henrietta's poverty had a direct impact on how well she understood medical information and how often she went for treatment; her lack of education made a trip to the hospital seem like a trip to a "foreign country." She went to Johns Hopkins only when she absolutely had to, and by the time she next visited and had a doctor look at her cervix, she had inoperable cervical cancer.

Hospitals at the time were segregated, if black patients were seen at all, so Henrietta was seen by the doctor in the black section of the hospital, where the walls of the examination room were of glass, no privacy at all. Henrietta's privacy and patient rights were further ignored when cells from the suddenly inoperable cancer she developed were taken from her without her permission. When she was admitted to the hospital, her own blood was taken from her for storage, labeled "Colored," in case she needed a transfusion, because blood from whites and blood from black people did not cross the segregation line. When Henrietta's pain was extreme, the doctors did not give her pain medication until she was nearly dead.

When Henrietta's family finally found out about her HeLa cells, their questions went unanswered. Instead doctors took blood from Henrietta's children without explaining their motives for doing so. The racism inherent in treating patients as if they had no right to information about their own treatment or health was evident in Henrietta's case and in the way her family was treated after her death. It likewise was evident in other cases where black people were used for medical research without their informed consent, such as the Tuskegee Syphilis Study, in which African American men with syphilis were asked to participate in a study but were never treated for their disease. With Henrietta's own cells, Chester Southam, a virologist, performed a similar deception, injecting the cancer cells into prisoners, mostly black and all poor, without telling the study participants it was cancer. Some patients continued to have tumor growth, and some died from metastatic cancer because of Southam's racist, classist treatment of prisoners for his own unethical gains.

Elsie Lacks's treatment at Crownsville is a particularly painful episode in the history of mistreatment of black people at the hands of the medical profession. She was put in an extremely overcrowded hospital and was likely operated on without her consent; her epilepsy "treatment" killed her when she was just 15. This part of the story further reveals the poor treatment the Lacks family received because of their economic status and race.

A Question of Ethics in Medicine

Henrietta Lacks did not give permission for anyone to take or use her cells. Doctors and scientists lied by omission in not telling the family about their studies with the HeLa cells. At the time of Henrietta's cancer treatment, there were no informed-consent laws to protect patients from unauthorized tissue collection. The debate over tissue rights continues to be fought in court, although the Supreme Court has determined that tissue removed from a patient no longer belongs to the patient. However, some aspects of tissue research threaten the privacy of patients, which has always been a tenet of the medical profession: to keep a patient's medical records private. Publication of Henrietta's private medical records in Michael Gold's book about HeLa cell contamination horrified Deborah Lacks, who was incapacitated by grief for days, having read of the excruciating pain her mother went through. Neither of the doctors Gold spoke with admitted to having given Gold the records, but doing so was a direct flouting of patient privacy.

The study of genetic information in the DNA in Henrietta's cells is also the scene of a particularly egregious, deliberate effort to mislead patients. Henrietta's children were asked to give blood, and Susan Hsu, the person who drew the blood, was not told to inform the Lacks children of the reason for taking the blood. The Lacks family, given no explanation, assumed it was to test them for the cancer that killed their mother. This lie by omission caused extreme worry and unnecessary grief for all of Henrietta's children, who were never informed of the results of their cancer test because there was no cancer test. In addition, the genetic information from the HeLa cells was used in the Human Genome Project. A patient's genetic information is particularly sensitive information because it can show the patient's tendency to succumb to certain diseases and health problems. This information has been used against patients when they try to purchase health insurance. A patient's information is now protected by HIPAA (Health Insurance Portability Act of 1996.) After the publication of this book, the Lacks family was successful in stopping the publication of the genome from the HeLa cells as open source information, and the board who now decides whether and how that genome can be used in research includes two members of the Lacks family.

A Question of Ethics in Science Journalism

Journalists who reported on the Henrietta Lacks story either got their information from the Lacks family, neglecting to fully explain to the family what they were going to write, or got access to records and information Henrietta's doctors should have kept private. Skloot told the Lackses exactly what she was doing, using them as her main resources, and enlisted their help in searching for information from medical and scientific organizations. In addition, Skloot worked to ensure the book would be about Henrietta Lacks and her family; she didn't want to inject her own thoughts and feelings into it. She reconstructed conversations with and between family members, doctors, and scientists based on hundreds of interviews. Skloot documents her sources for these reconstructions and her fact-checking sources in an appendix in the back of the book.

Michael Gold, the reporter whose book included information from Henrietta Lacks's private medical records, ignored his duties as an ethical journalist by neglecting to inform the family he had this information and neglecting to check the information's accuracy. Many publications used a photo of Henrietta Lacks without researching its source or making sure the subject or the subject's family was amenable to its publication.

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