The Immortal Life of Henrietta Lacks | Study Guide

Rebecca Skloot

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The Immortal Life of Henrietta Lacks | Part 3, Chapter 25 : "Who Told You You Could Sell My Spleen?" (1976–1988) | Summary

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Summary

Skloot notes that other people have fought to keep rights to their cells and tissues. One such person is John Moore, a leukemia patient who had his cancerous spleen removed at UCLA Medical Center. His surgeon, David Golde, asked Moore to return to UCLA to give blood, semen, and marrow samples, presumably to make sure Moore was clear of cancer. When Moore moved to Seattle, he wanted to give samples closer to home, but Golde paid for Moore's flights and hotel to keep him coming to California. Moore became suspicious. When he was asked to sign consent forms giving UCLA rights to any cell line or product developed from his blood and marrow, he refused. He then discovered Golde was developing a cell line called Mo and planned to patent it; the market value was $3 billion.

The first instance of patenting biological products came in the 1980s, when researchers created a bacterium to clean up oil spills. This genetically modified biological product involved human ingenuity. There also were patients sold their own cells for profit. In the 1970s Ted Slavin, a hemophiliac who had frequent blood transfusions to stay alive, found out his blood contained high concentrations of hepatitis B virus. Scientists were eager to study his blood samples to seek a treatment for hepatitis B, a disease that can cause jaundice, fever, and disability. He sold blood samples and then worked with a scientist to develop a vaccine for the virus. He later started a company called Essential Biologicals to enable others to sell their valuable cells to researchers.

However, John Moore could not sell his own cells because Golde had filed for a patent. Moore sued Golde and UCLA, but the judge threw out the case, citing the HeLa cell line "as a precedent for what happened with the Mo cell line." Moore appealed his case and won; then Golde appealed and won. The Supreme Court of California ruled that when tissues are removed from a person's body, they cease to belong to that person. However, the court agreed financial interests should be divulged before someone's tissues are sampled and used.

Skloot notes the Lacks family never heard about Moore's case. They remained convinced Johns Hopkins had bilked them out of millions of dollars. Meanwhile, Deborah just wanted people to know the good her mother had done.

Analysis

The debate continues over who owns tissues and cells after they are removed from a patient's body. But the consensus is that patients must be notified if there are financial interests related to their tissues. Ted Slavin's doctor told him his blood would be useful to researchers, so Slavin was able to benefit financially. But John Moore's doctor misled him. Although the California Supreme Court ruled against Moore, it recognized the need to legislate "regulation and patient protections in research."

Some scientists say if patients sue them for the rights to their cells, the scientists will be unable to perform valuable research. Skloot says this is not a very good argument. She notes that scientists sue each other over patents and cell lines so often that patient lawsuits aren't going to be what slows down their research. She says scientists were "triumphant, even smug" about the final win in the Moore case; clearly she feels the court made a mistake in taking away patients' rights to their own tissues.

The Lackses have different priorities regarding their mother's cells. The brothers focus on the money Johns Hopkins must be getting for HeLa. In fact Johns Hopkins isn't making money on the cells, but biological firms are profiting greatly. The Lacks brothers don't know who to talk to and can't afford a lawyer, so they haven't sued. They are poor and black—two strikes against them in finding legal help. John Moore, on the other hand, is white, which probably made it much easier for him to get his case to court.

Deborah Lacks wants people to know about her mother and the good her HeLa cells have done. She wants Henrietta to get credit. Deborah wants to know more about her mother, too; this is more important to her than monetary gain.

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