In 1951, an African American woman named Henrietta Lacks discovered what she called a “knot” on her cervix that turned out to be a particularly virulent form of cervical cancer. The head of gynecology at Johns Hopkins Hospital, who was studying cervical cancer at the time, had asked the head of tissue culture, George Gey, to develop a culture of both healthy and cancerous surgical cell tissue. As a result, Gey asked for tissue samples from all cervical cancer patients, including Henrietta Lacks. At the time, no human cells had ever survived long in a laboratory, but Henrietta’s cancer cells, which Gey labeled as HeLa, survived. Meanwhile, Henrietta underwent treatment for her cervical cancer but succumbed to the disease, leaving behind her five children and husband. The Lacks family had no idea that doctors had taken her cells or that some of her cells were still alive. When the doctors at Hopkins requested an autopsy, Henrietta’s husband Day hesitated, but relented at his cousin’s insistence when a doctor suggested that the information gleaned from the autopsy could someday help his children. It wasn’t until 1973, when a family friend who was a researcher mentioned that he did work on HeLa cells, that the family learned a part of Henrietta was still alive.
Gey’s culture of HeLa cells not only survived, but allowed scientists to conduct unprecedented research on disease and genetics, as well as develop new medical treatments and vaccines. At no charge, Gey gave samples of HeLa cells to any researcher who requested them. Over time, for-profit cell culture labs sprung up, mass-producing HeLa cells and other cell lines in order to more efficiently supply research labs. However, because HeLa cells were so hearty and grew so quickly, they had the potential to contaminate other cell cultures. In 1973, geneticists realized that if they could identify distinct genetic markers within HeLa cells, they could more easily identify which cultures had been contaminated. To that end, a geneticist at Hopkins asked Henrietta’s children to have blood samples taken. The doctors didn’t make sure that the Lacks children understood why they needed to have blood drawn, and Deborah, Henrietta’s daughter, believed that they were giving her a cancer screening.
Meanwhile, because HeLa cells and cell culturing promised so many advances in medicine, the media spread the story of the “immortal” cell culture and the mysterious woman behind the cells. Although a colleague of Gey’s published Henrietta’s real name in a small niche journal, most mainstream news outlets mistakenly gave her name as Helen Lane. In 1975, a journalist from Rolling Stone named Michael Rogers discovered Henrietta’s true name and contacted the Lacks family for an article about HeLa cells. The Lacks family was horrified to learn that other people were profiting from Henrietta’s cells. The experience reminded them of the terrible history of white doctors in the US conducting unethical research on black patients. Journalists continued to approach the family, including a BBC documentary team in 1996. Deborah hoped the documentary would bring Henrietta’s story to light and help Deborah learn more about her mother. Unfortunately, the documentary also attracted Sir Lord Cofield, a conman, to the family. Posing as a lawyer, Cofield claimed he could help the family sue Hopkins Hospital. When the family discovered his scam, he threatened legal action against the family, terrifying them. The stress from the ordeal gave Deborah a stroke.
In 1999, Rebecca Skloot, the author of this book, attempted to make contact with the Lacks family as she began her research. Because of the history of white journalists contacting the family for stories without offering transparency or proper compensation, in addition to the very recent ordeal with Cofield, the family initially didn’t want to speak with her. However, Skloot kept trying to make contact and spoke with several cousins in the Lacks family. Because she knew that Deborah wanted to know more about who her mother was as a person, Skloot left messages on Deborah’s phone sharing what she learned about Henrietta’s childhood. Finally, Sonny and Deborah Lacks agreed to speak with her. Deborah made Skloot promise to share all of her research and help her understand what happened to her mother. She also wanted to find out what happened to her sister, Elsie, who had been placed in a mental institution before Deborah was born. Skloot agreed, and Deborah regularly accompanied Skloot on her research trips.
In 2001, a researcher at Johns Hopkins invited the Lacks family to his lab. Accompanied by Skloot, Deborah and Deborah’s brother, Zakariyya, finally got to see where Hopkins kept their mother’s cells, and even watched HeLa cells divide under a microscope in real time. Later that week, Skloot and Deborah went to the hospital where Elsie had been institutionalized, and discovered that she’d been subjected to horrific abuse. Deborah’s blood pressure spiked from the stress of everything she had learned that weekend, and she began to behave erratically. Her cousin, Gary, performed a religious soul cleansing ceremony on her in which he lifted the burden of the cells from Deborah’s shoulders. To Skloot’s surprise, Gary proclaimed that from now on Skloot would help carry the burden for Deborah. Deborah decided that she wanted to learn more about science in order to better understand what happened to her mother, but didn’t have the money to pursue adult education. Instead, she focused her efforts on her grandchildren and her siblings’ grandchildren, and encouraged them to go to school. Skloot remained in contact with Deborah as she wrote the book and promised to share the final manuscript before it went to press. Sadly, Deborah died in 2009, right as Skloot made final touches on the book before publication.