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Summary: Chapter 23
In 1973, Bobette learned about Henrietta’s cells from a friend who was a scientist. Upon learning he ordered Henrietta’s cells from a supplier, Bobette worried Hopkins would come after Henrietta’s children and grandchildren.
Meanwhile, researchers sorted through the HeLa contamination problem. Victor McKusick, a colleague of Jones, suggested using DNA samples from Henrietta’s family to map her DNA. He asked his post-doctoral fellow, Susan Hsu, to obtain blood samples from the Lacks family. Because Hsu spoke English as a second language, she had difficulty communicating why she needed blood samples to the Lacks family, who had little scientific literacy. Furthermore, Day had been brought up not to question doctors even for clarification. Day and the Lacks children believed Hsu was screening them for cancer. At the time, drawing blood for a genetic marker exam didn’t require a consent form.
Deborah worried that the blood test meant Hopkins doctors believed she would get the same cancer her mother did at thirty. After reading an article about the Tuskegee Syphilis experiments, she worried the doctors at Hopkins had injected her with her mother’s cancer. She asked Day about Henrietta’s illness, and panicked when Day told her that Henrietta hadn’t seemed sick until after she started treatment. When McKusick asked Deborah for another blood sample, she went to get more answers. McKusick told her about HeLa’s contributions to science, which only made Deborah worry her mother’s cells felt the experimentation done on them. He also gave her a medical textbook he had written and signed, which Deborah couldn’t understand. The textbook had a photo of Henrietta, but no one in the family knew how anyone had gotten ahold of it.
Susan Hsu later told Skloot that she didn’t realize the Lacks family didn’t understand what was happening.
Summary: Chapter 24
Michael Rogers, the Rolling Stone reporter from Chapter 9, found his way to Lawrence Lacks’ house in 1975 using the phone book. He later told Skloot it was clear to him that the family didn’t understand what happened to Henrietta’s cells.
At first Sonny and Lawrence weren’t upset about the cells, but when they read Roger’s article and realized people sold and profited from Henrietta’s cells, they were furious. They believed George Gey and Hopkins got rich from their mother’s cells. However, there’s no evidence Gey or Hopkins as an institution profited from HeLa cells. Biotech companies and various for-profit cell banks have made money from HeLa, and some nonprofit cell banks also sell the line.
Deborah tried to read the textbook McKusick gave her. Every time she heard about new HeLa research, she panicked. She was also furious that people still called her mother Helen Lane and not Henrietta Lacks.
Rogers’s article created a lot of publicity and controversy because it was the first time a mainstream news source revealed the woman behind HeLa was black. The racial aspect added a new layer of discussion both in light of the Tuskegee Syphilis experiments and the way scientists talked about HeLa infecting other cell cultures.
Summary: Chapter 25
In 1976, a man named John Moore underwent treatment for hairy cell leukemia. His doctor at UCLA, David Golde, removed his spleen, and Moore returned to UCLA every few months for follow-up appointments. Seven years after his surgery, Moore realized that the consent form the nurse gave him signed the rights to any cell line obtained from him to the university. Moore sent the form to a lawyer, who discovered Golde had used Moore’s cells to market a cell line and sell the patent, which was worth billions of dollars.
In the 1970s, a man named Ted Slavin learned from his doctor that his cells produced high concentrations of Hepatitis B antibodies, which made them valuable to researchers. Armed with this information, Slavin decided to sell his antibodies. He started a company called Essential Biologicals, which worked with people who wanted to profit from their own cells.
Moore didn’t have Slavin’s option because Golde had already patented his cells. In 1984, Moore sued Golde and UCLA, claiming the cells as his property. Initially, the court threw Moore’s case out, but Moore appealed. The Supreme Court of California finally ruled that once tissue leaves someone’s body, it no longer belongs to them. However, the court believed Golde failed to obtain informed consent from Moore, and asked legislators to draft regulations for consent. The court feared that giving patients control would destroy economic motivation for researchers, encourage patients to restrict access to raw materials, and slow scientific research.
Analysis: Part 3, Chapters 23–25
Chapters 23 and 24 show once again the harm of the lack of clear and respectful communication between doctors and patients, as well as the culture of not questioning expert authority. Skloot’s narration makes clear that while Susan Hsu was not at fault, the combination of the language barrier and a culture in medicine that discouraged forthcoming and respectful communication with patients was a disastrous one. As shown by Deborah’s fears of cancer, the blood samples taken by Hsu caused the Lacks family further confusion and distress. Furthermore, Skloot specifically notes that Day had been taught not to question doctors, in particular white professionals, which signals that he didn’t feel free to speak up when he didn’t understand what was going on. Gey’s misleading promises that taking Henrietta’s cells could one day help Day’s children also impacted the family’s understanding of the blood samples. While McKusick may not have had nefarious intentions, he also didn’t consider taking the time to give Deborah a compassionate explanation for the blood samples, which could have comforted and informed Deborah. Instead, he gave her his own textbook, which he also signed, a self-aggrandizing act meant to demonstrate his knowledge.
The Lacks family’s focus on George Gey and Hopkins as targets of their anger stems from both proximity and culpability. We may find Lawrence’s anger at Gey to be misplaced because Gey didn’t profit from HeLa. However, Gey did create the sample that allowed others to profit from her cells. Gey also received credit for the creation of HeLa, which adds to his already considerable social capital. Furthermore, he made no effort to contact Henrietta’s family after her death to inform them of what he had done, nor did he give credit to Henrietta or tell her story in scientific forums. Thus, Gey may be seen as culpable for not only violating Henrietta’s right to bodily autonomy but also causing long term harm to the Lacks family. Gey also provides a convenient target for the Lacks’ anger. As the book has shown thus far, the factors that allowed Gey to think of Henrietta as a convenient research subject and for science to profit from her cells are large and structural, including racism and poverty. George Gey represents someone concrete and close to the story to focus their anger on, and he also helped create the situation.
The poisonous effects of racism on truth appear again in the public’s reactions to the Rogers article. At this point, scientists had determined that HeLa cells contaminated others because they were cancerous, not because of Henrietta’s race. In fact, Henrietta’s race actually helped scientists discover the contamination because her cells carried genetic markers distinct to black Americans. However, the history of anti-blackness in US culture and science makes it difficult to process the story of HeLa contamination through a neutral lens. From the perspective of a black reader, the word “contaminate” evokes racist stereotypes of black people carrying diseases, and also the reality that during segregation any black ancestry whatsoever caused a person to be considered black, and thereby inferior, under the law. To a racist person, the misinformed rhetoric that a black woman’s cells contaminated science would serve as bias confirmation and reinforce the worst stereotypes about black people. The information about Henrietta’s race could neither be neutral or descriptive, as, in the United States, blackness is loaded with erroneous meanings invented to enforce generational slavery. Structural racism in the scientific community, therefore, distorts reality, prompting both research based on false ideologies as well as biased conclusions.
Skloot introduces the story of John Moore to demonstrate the far-reaching implications of doctors taking a cell culture without a patient’s knowledge or consent. Just like with Henrietta’s cancer, Moore’s doctor violated his trust by creating a valuable cell culture from his cells without his knowledge or consent. However, Moore could afford to consult with a lawyer and eventually sue his doctor, unlike the Lacks family who could barely afford necessary healthcare. Even though he eventually lost his case, Moore’s relative wealth allowed his voice to be heard on his own terms, an option not available to the Lacks family. The California Supreme Court’s ruling also shows a shift in priorities from the New York Board of Regents’ handling of the Southam case because it downplayed the question of consent to focus on profit. The court did encourage legislators to draft clear guidelines for consent, but the majority of the decision focused on how to maintain a profit motivation for researchers. This new focus demonstrates the emerging role of privatization and profit in scientific research in the 1980s.
