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Deborah survived her thirtieth birthday free of cancer. In 1981, she married James Pullum, who later became a preacher.
The Lacks family still suffered from poverty. Zakariyya was released from prison, but still struggled to hold down a job and was often homeless. He blamed Day for Henrietta’s death and the violence he suffered at Ethel’s hands. Sonny got most of his income from running a food stamp ring. Alfred Jr. got in continual trouble with the law, even going AWOL from the Marines. The most money they saw came from a class action lawsuit against a boiler manufacturer who allowed Bethlehem Steel workers to be exposed to asbestos.
In 1985, science writer Michael Gold released a book about HeLa contamination. When Deborah looked through it, she saw details of Henrietta’s medical record that the family had never seen. Skloot later spoke to Gold, but he couldn’t remember how he’d gotten Henrietta’s records, and Jones and McKusick both deny giving them to him. Gold did claim to make a small effort to contact the family, but admitted that his focus was on the science and saw Henrietta’s personal information as auxiliary details to give the piece character.
In 1984, a German virologist discovered a new strain of the human papilloma virus (HPV), which causes cervical cancer. He also discovered that this new strain of HPV caused Henrietta’s cancer.
The Lacks family had their own theories as to why Henrietta’s cancer was so terrible. Her sister Gladys believed it was divine punishment. Cootie suggested disease-causing spirits. Sadie wondered whether something alien got inside of her.
In the early nineties, two scientists began to argue that HeLa was no longer human because it had mutated too far from its original state. Other scientists argued that this was merely a result of scientists preferring not to think too hard about HeLa cells being human cells.
Other scientists believed that HeLa might hold the key to extending human life. In 1961, Leonard Hayflick proved that cells could only divide about fifty times before they died, a number called the Hayflick limit. A disease like cancer has the potential to reprogram the cells, removing their Hayflick limit.
In 1996, BBC began making the documentary on Henrietta Lacks that Skloot would later watch at Speeds Grocery. Deborah agreed to work with the documentarians, thinking that it would bring her peace to have everyone know the story. The interviewers kept telling Deborah not to go off topic when she talked at length about her mother and asked her questions like, “What is cancer?” They went with the Lacks family to the conference Pattillo organized in Henrietta’s honor.
The documentary attracted the interest of Speed, who had founded an organization dedicated to celebrating notable black residents of Turner Station. Speed and a sociologist named Barbara Wyche set up a foundation to create a history museum in Henrietta’s honor. Someone suggested to Deborah that she donate Henrietta’s Bible, which had a lock of hair from both Henrietta and Elsie tucked inside it. Deborah was furious that people were collecting money in her mother’s name for a museum when the family couldn’t get healthcare.
Wyche wrote to government officials and the president of Johns Hopkins Hospital calling for them to recognize the contributions of Henrietta Lacks. A small group at Hopkins began to meet unofficially to discuss what could be done.
Unfortunately, the publicity also attracted Sir Lord Keenan Cofield. He claimed to be a lawyer and insisted the family needed to copyright Henrietta’s name and sue Hopkins for medical malpractice. A lawyer for Hopkins contacted the Lacks family to warn them that Cofield was a fraud. When the family cut him off, Cofield attempted to sue the Lacks family and Speed’s foundation for breach of contract, plus several people at Hopkins for racial discrimination.
Deborah panicked when she received the summons, and even accused Speed of conspiring with Cofield. She demanded Speed stop the historical foundation’s activities. The Hopkins lawyer assured Deborah they would fight Cofield, and the lawsuit was thrown out.
Deborah had a stroke from the stress caused by this ordeal. Around this time, she read Henrietta’s medical records and learned that Elsie had been committed to Crownsville. Unfortunately, Crownsville’s records from that time period had been destroyed in a fire.
These chapters demonstrate the ability of journalists to harm their research subjects through unethical practices. Michael Gold’s book in particular exhibits extreme negligence in both his publication of Henrietta’s medical records without permission and also his lack of transparency in his methods. His attitude also treats her life as a personal interest hook for the book and not as the subject of her own story. In this way, Gold’s approach to telling Henrietta’s story mimicked researchers’ initial use of her cells in that they focused on the science over the person who made it possible. Although the BBC documentarians spent an extensive amount of time with the Lacks family, they attempted to minimize the personal impact of their story by not allowing Deborah to talk about missing her mother. The questions the documentarians asked the family seem designed to emphasize the family’s lack of education, setting them up as a spectacle. Furthermore, it appears that the documentarians didn’t remain in touch with the Lacks family after the documentary went to press, leaving them at the mercy of further publicity and con men like Cofield. Like unethical doctors, unethical journalists prioritize their end goal, their scoop, over those affected by it.
Deborah and Speed clashed over the creation of a museum because Henrietta represented different things to both of them. Speed clearly was excited about the idea of celebrating an unrecognized black woman from her town, potentially inspiring young black children to become scientists and foster a sense of civic pride. Despite this noble goal, Speed’s desire to create a museum treated Henrietta’s story as something already finished, something to remember and educate others about. For Deborah, Henrietta’s story still lived within her as unanswered questions and unrighted wrongs. Therefore, Speed and Wyche raising money for a museum felt to Deborah like attention and resources again going towards Henrietta’s scientific legacy at the expense of her family, even if the museum’s narrative focused on the way doctors took Henrietta’s cells without her permission. The suggestion that Deborah donate Henrietta’s Bible heightened this feeling because it implies that the Bible’s value to history and the community was more important than the personal, emotional value it had to Deborah.
Cofield’s ability to dupe the Lacks family emphasizes how mistreatment by professionals and experts had left them vulnerable. By portraying himself as a lawyer, Cofield set himself up as a person with education and authority, which meant both that he was someone not to be questioned and someone with the power to help the family. Cofield preyed on the family’s fears and trauma surrounding Henrietta’s treatment by talking about medical malpractice, and promised them the justice they had been denied. Unlike the researchers at Hopkins or the journalists who had spoken to the Lacks family at this point, Cofield claimed to have the answers, and appeared to be forthcoming with information. Since real professionals had neglected their ethical duty to inform and support the Lacks family or work towards reparations, Cofield had an easy opening to take advantage of the Lacks family. Worse, Cofield’s actions closed doors for the Lacks family because his lawsuits discouraged the group at Hopkins and others from pursuing reparations for Henrietta.
Doctors’ attempts to declare HeLa cells to be their own species highlights the discomfort researchers feel with personalizing their science. If scientists were to reclassify HeLa cells as their own species, they would very literally dehumanize Henrietta in an unprecedented way, formally labeling her cells as separate from her personhood and from humanity altogether. The discomfort with the humanity of Henrietta’s cells signifies how some scientists would rather erase the unsavory history of science dehumanizing people as raw material than acknowledge such problems in order to figure out ways to move forward. This conversation took place in the 1990s, around the same time as the BBC documentary aired, which suggests that the heightened awareness of Henrietta’s story may have created the scientists’ discomfort at having to acknowledge the ethical issues of their practices and institutions. This example is yet another instance of the ways scientists and journalists have tried to mold the story of HeLa cells at the expense of the Lacks family, thereby perpetuating the processes of structural racism and dehumanization which enabled doctors and scientists to exploit Henrietta in the first place.
Ace your assignments with our guide to The Immortal Life of Henrietta Lacks!