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.
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.
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.