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Science writer Rebecca Skloot has always been obsessed with Henrietta Lacks, the African-American woman whose cancer cells were harvested and used to create an immortal cell line for scientific experimentation. Because there isn't much information about Henrietta and her family, Skloot wants to tell their story. But she doesn't realize how much backstory and emotional baggage exists until she starts contacting the family and people connected with them.
It turns out that the Lacks family is very hostile to the idea of speaking to yet another reporter about their wife and mother's famous cells. Skloot quickly learns that the Lacks family has been badly treated by both media and the scientific community, and that she'll have to earn their trust before they'll allow her to tell their story.
Thirty year-Henrietta Lacks sought help in 1951 at Johns Hopkins Hospital in Baltimore for what she called a "knot" on her cervix. She was diagnosed with cervical cancer and treated with radium and x-ray therapy.
In the process, some of the tissue was removed from her tumor and sent down to George Gey's lab at Hopkins to be cultured, or grown, in test tubes. Gey was the head of the tissue culture department at Hopkins and he'd been trying for years to get cells to divide continuously and infinitely in the lab so that the scientific community could have an inexhaustible supply of human cells to experiment on.
Neither Henrietta nor any of her family members knew about the tissue sample—and neither Gey nor Hopkins ever informed them. They didn't inform them even after the cells began to grow amazingly fast and Gey and the rest of the scientific world realized they'd just made a gigantic breakthrough in medical technology.
Maybe it wouldn't have meant anything to the Lacks family, who were poor, uneducated and extremely wary of the medical community. They had to focus on Henrietta, whose cancer cells spread as rapidly through her body as they did in the lab. She had rounds of radiation and x-ray therapy, but Henrietta didn't survive her disease. She died at the age of 31, leaving behind a husband and five young children.
Her husband, David ("Day") Lacks allowed a cousin and his wife to move into their house to take care of the children. But both Ethel and Galen were abusive to the children, and they all suffered horrendously at the hands of their relatives. Deborah and Joe suffered the most: Joe was beaten and isolated from the rest of the family, while Deborah was sexually molested by Galen.
When oldest brother Lawrence moved in with his girlfriend Bobbette, she insisted that they take in his younger siblings. But the damage was done. Joe grew up to be violent and unstable, and spent years in prison for murdering a guy who had threatened him. Deborah still had to fight off Galen and ultimately found herself in an abusive marriage at a young age.
During her teenage years, Deborah learned about the existence of an older sister, Elsie, who was institutionalized and died at Crownsville Hospital for the N**** Insane. Elsie suffered from congenital syphilis and couldn't hear or speak. She also suffered from epilepsy. Deborah knew very little about her mother and sister and had a lot of anxiety about this.
Deborah and the rest of the Lacks siblings learned about Henrietta's cells (called HeLa cells) quite by accident when a researcher from the National Cancer Institute was visiting a friend of Bobbette. He asked her last name and excitedly asked her if she was related to Henrietta Lacks. He told her about HeLa and Bobbette ran to tell the family that part of Henrietta was still alive. Pretty soon, researchers from Johns Hopkins were calling the family to get permission to draw their blood. Apparently, HeLa cells were so prolific that they had begun contaminating other cell lines all over the world. Now they had to be contained. In order to do this, scientists needed to find genetic markers in HeLa cells that would help them definitively identify the cell so they could keep other cell lines separate.
The Lacks family had no understanding of what HeLa cells were, where they came from, or what it meant when doctors and scientists say that Henrietta's cells are "immortal.' And the scientific community wasn't doing anything to rectify that. Mostly, they were trying to cover their butts, as HeLa had since become a massive for-profit industry—without the family's knowledge and without any financial benefit to the family.
This was particularly bad for the Lackses on two levels: first, they thought that Henrietta was still alive somehow and suffering in all these labs. Then they felt exploited, since others were profiting from their mother's cells while they lived in poverty and couldn't even afford to see a doctor.
Skloot works with Deborah to uncover the story of Henrietta's life, death, and transformation into immortal cells. She also promises to help her find out the truth about Elsie and her fate. They travel to Crownsville and find out some very disturbing things about Elsie's treatment there. Deborah suffers from the knowledge that her sister died alone and abused, but still feels she's better off knowing.
In the process of investigating and Henrietta's life, Skloot also tells the story of unethical scientific experimentation on human subjects and how the law struggled to keep up with such atrocities. She touches on the Tuskegee syphilis studies (and their relationship to the story of HeLa cells), Chester Southam's infamous cancer studies and the more anecdotal stories of "night doctors" who allegedly snatched black men and women off the streets of Baltimore in order to experiment on them. Even though she's a science reporter who's generally enthusiastic about scientific advances, Skloot paints a picture of the medical and scientific communities as corrupted by racism, exploitation, and the objectification of their patients and research subjects.
Ultimately, Skloot and other sympathetic doctors and researchers are able to answer the Lacks family's questions about Henrietta and her contributions to science over the last six decades. Although she can't force the scientific community to make reparations to the Lacks family, Skloot creates a foundation to help the family financially. But she also does something much more: she ensures that the rest of the world gets to hear the incredible story of the young mother, a descendant of slaves, whose suffering changed the course of medical research and made life healthier for the rest of us.