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After Henrietta’s death, Lawrence dropped out of school to support his siblings. He was drafted into military service and served two years in a Virginia base. No one told the younger Lacks children what happened to Henrietta, and they weren’t allowed to question the adults.
Ethel moved into Day’s house with her husband, Galen. She fed the children little food and made them clean the house. Joe took the brunt of Ethel’s anger, and she frequently beat him. When Lawrence returned home, he moved in with his girlfriend, Bobette. They discovered how Ethel treated the Lacks siblings, and Bobette insisted the children move in with them.
Meanwhile, Galen began to sexually assault Deborah. Bobette found out by accident, but protected Deborah and encouraged her to continue her education. However, Deborah wanted to marry her neighbor, Cheetah, because she thought having a husband would keep Galen away. She considered dropping out of school because, like her siblings, she didn’t hear well. Since she had been taught not to speak up to adults, her teachers didn’t know she couldn’t hear them. Bobette told her to sit towards the front of the classroom.
Deborah didn’t know about Elsie, who died soon after Henrietta, for most of her childhood. When Day told her that Elsie had been deaf, Deborah was upset that no one had tried to teach her sign language.
Cootie sent Skloot to talk with Henrietta’s cousin, Cliff, who had grown up with Henrietta. He brought her to the Lacks family cemetery. The plot contained both white and black members of the Lacks family, and because many family members couldn’t afford gravestones, some graves were unmarked. Cliff pointed out the gravesite of Henrietta’s mother, but Henrietta’s own grave was unmarked.
Henrietta’s maternal great-grandfather was a white man named Albert Lacks, who had divided his land between his three sons. When his son Albert Jr. died, he left his land to his black descendants. His brother Benjamin successfully sued to take back some of the land, and the court granted him half of Albert Jr.’s property. Sixteen years later, Benjamin divided up his land between his own seven black children.
Skloot visited the oldest white members of the Lacks family in Clover, whose home has a Confederate flag as decoration. They denied any relation to the black Lackses, and insisted that the formerly enslaved took on the last name of their masters.
Henrietta’s sister Gladys disagreed. Gladys told Skloot about her sister Lillian, who had extremely light skin, and was able to pass for Puerto Rican. She moved to New York, married a Puerto Rican man, and lost contact with the rest of the family.
In the 1950s, virologist Chester Southam worried that contact with HeLa cells might infect researchers with cancer. To test this, he injected cancer patients’ arms with HeLa cells while claiming to conduct an immune system test. Nodules grew on the patients’ arms. The cancer spread to the lymph nodes of one patient.
Southam asked for volunteers at the Ohio State Penitentiary to study the effect of HeLa cells on healthy patients. Tumors began to grow on the volunteers’ arms. The healthy patients appeared to resist the cancer cells, and Southam believed himself close to developing a cancer vaccine.
Southam thought he didn’t need to inform patients he had injected them with cancer cells because he believed it would cause unnecessary fear. In 1963, he arranged to continue these experiments at the Jewish Chronic Disease Hospital in Brooklyn. However, three Jewish doctors declined to participate, comparing this research to that of the Nazi doctors tried at Nuremburg. The Nuremberg tribunal established the Nuremberg Code, a list of ethics designed to govern human experimentation. However, the Nuremberg code wasn’t the law, and many American doctors claimed they didn’t know it existed.
When Emmanuel Mandel, the hospital’s director of medicine, ordered a resident to give the injections, the three doctors resigned, sending a copy of their resignation letter to the press. A lawyer on the hospital’s board of directors took up the doctors’ case and sued the hospital. The New York State Attorney General called for Southam and Mandel to lose their licenses. Many doctors testified on behalf of Southam and Mandel, but the Board of Regents called for more specific ethical guidelines for research. Southam and Mandel faced one-year probation. Following this, the NIH declared that in order to qualify for funding, experiments on human subjects had to undergo scrutiny by a review board.
Within the Lacks family, the relationships between children and adults mirror the authoritative and hierarchical relationship between doctors and patients. Reminiscent of the doctrine of benevolent deception, the Lacks children were denied crucial information about their mother and sister Elsie that kept them from fully understanding the changes in their family. In addition, just as Henrietta suffered from not feeling free to question the doctors about her treatment, the Lacks children’s silence caused them further harm. The stigma within the Lacks family surrounding questioning or bothering adults kept the Lacks children from speaking out about their abuse at Ethel’s hands, and Deborah from seeking protection from Galen. Bobette’s intervention came not at the children’s request, but from her own observations, which suggests that if the children had felt free to talk to the adults in their life sooner, she could have helped them. Furthermore, Deborah’s fear of questioning adults extended to adults outside the family, nearly causing her to drop out of school before she asked for accommodation for her partial deafness.
The anecdote about the white branch of the Lacks family in Chapter 16 demonstrates the prevalence and insidiousness of anti-black racism. Although Alfred Jr. and Benjamin’s wills provide compelling evidence that the black and white branches of the Lacks family are related, the white Lackses cannot admit the truth because of their presumably racist beliefs, as signified by the multiple confederate flags in their home. This chapter also includes the story about Lillian, for whom being black represented such a burden that she decided to pretend to be Puerto Rican. In both stories, racist ideas and beliefs create false narratives. Lillian only pretends to be Puerto Rican, and the white Lackses cannot admit that they have black family members. This tie between racism and falsehood demonstrates how racist viewpoints distort the truth and lead to false conclusions. Nevertheless, racism lies at the root of many of the unethical experiments performed on black people, including the aforementioned Tuskegee experiment, which used black subjects because of the belief that black people were more likely to have syphilis. Therefore, these experiments were not only cruel, but their basis on lies render any conclusion they make suspect.
The extreme lengths Southam went to conduct research without regard to his subjects highlights the danger of benevolent deception. His actions demonstrate that he believed his goal of creating a cancer vaccine was more important than the patients who already suffered from the disease. This belief motivated him to lie to the patients he injected with HeLa cells, disguising a completely unnecessary procedure as a test for their benefit. Instead of seeking volunteers from the general populace for his study on healthy patients, he chose to work on prison inmates, people at a social disadvantage. Although these patients at least got to consent to the experiment, their being incarcerated brings into question how much agency they really had. In both cases, his definition of the greater good ignored the wellbeing of those who were already vulnerable. Southam demonstrates that at its core, the idea that doctors can lie to their patients for their own good compounds an already dangerous power dynamic between doctors and patients and perpetuates structural injustice. With his power, Southam chose whose good he worked for, and ceased to prioritize the wellbeing of his more vulnerable patients.
The story of the three Jewish doctors at the JCDH demonstrates the problematic state of consent in medical research in the 1960s. Like Skloot, who opened this book with the quotation from Elie Wiesel, these doctors saw a connection between the barbaric research the Nazis conducted and medical practice that many doctors apparently considered standard in the US. Their connection between the two raises the disturbing question of what makes an American researcher different from a Nazi doctor if American researchers believe that they can conduct experiments on patients without their knowledge or consent, especially when so many of these experiments take advantage of structural racism. This story also outlines the distinction between code and law. The Nuremberg Code, as a code, represents an ideal and a standard that doctors and researchers are encouraged to emulate. A law, by contrast, is a standard to which countries and states can hold citizens legally responsible. In the 1960s, medical ethics surrounding cell research were codified in standards, not laws, which takes for granted that doctors and researchers operate with good intentions. However, Southam’s repeated unethical behavior proves that even those with a benevolent goal are capable of terrible things.
Ace your assignments with our guide to The Immortal Life of Henrietta Lacks!