A producer at the BBC named Adam Curtis decides to make a documentary about Henrietta in 1996—the same documentary that Rebecca eventually watches. Deborah believes that Curtis will make the world understand what her family went through. He and his crew coach Deborah through many interviews, and take footage of the whole family. They even follow the Lackses to a conference in Atlanta organized by Roland Pattillo in Henrietta’s honor.
Like Michael Rogers before him, Adam Curtis seems like a huge opportunity to the Lackses: if they can just get their story told, then they may be able to get credit and money for all that their mother went through.
Pattillo, Rebecca explains, grew up in a segregated town in Louisiana. After becoming the first in his family to attend school, he learned about Henrietta while working for George Gey. Finally, in October 1996 at the Morehouse School of Medicine, Pattillo organizes the first HeLa Cancer Control Symposium. Researchers present papers about “cancer in minorities,” and Pattillo calls for Atlanta to name October 11th Henrietta Lacks Day. Howard Jones even pens an article, lamenting Henrietta’s illness but praising her sacrifice in the name of science.
Within the story of Henrietta Lacks, Roland Pattillo emerges as a hero—educated as a scientist, he also understands the pain and suspicion that the Lackses feel towards the medical establishment. He tries to show the family that not all scientists are out to get them, while also giving Henrietta the honor and respect that she deserves. He also makes sure to give Deborah a voice, something that even her own brothers fail to do.
The entire Lacks family travels to Atlanta for the conference, along with the BBC crew. When they arrive, the Lackses are “treated like celebrities.” Deborah speaks at the conference, saying that it is a dream come true, and expressing how much she still misses her mother.
The tide finally begins to turn as more people start trying to get Henrietta the recognition and honor that she deserves. With these efforts comes some degree of comfort for Deborah, who is happy that her mother has helped so many.
The BBC crew begins interviewing residents of Turner Station as well, and news reaches Courtney Speed, who has just founded the Turner Station Heritage Committee. After learning about HeLa, Speed, along with a sociologist named Barbara Wyche, begins agitating for recognition for Henrietta. They contact multiple branches of government, as well as Terry Sharrer, a Smithsonian Museum curator. The museum arranges a small event, and attendees tell Deborah “that her mother’s cells had helped them overcome cancer.”
The Lackses now get some real allies on the home front, as Barbara Wyche and Courtney Speed also become advocates for Henrietta and Deborah’s cause.
After the event, Sharrer writes to Wyche and recommends that she and Courtney Speed found an “African-American health museum in Turner Station.” The two begin to create “the Henrietta Lacks Health History Museum Foundation, Inc.,” and attempt to publicize their organization. At first, Deborah is furious, saying that the money the women are trying to raise should go to the Lacks family. But she eventually agrees to help when Speed and Wyche offer to aid her in finding out more about her mother.
Even when people like Courtney Speed and Barbara Wyche try to help her, Deborah remains deeply suspicious. This is unsurprising; after all, considering how much the Lackses have been taken advantage of, it makes sense that they should be suspicious of any and all people who show an interest in Henrietta.
Speed and Wyche invite Mary Kubicek to speak at an event, and attendees question her about who’s profited from the cells, and whether George Gey had patented them. As Mary tries to respond, the crowd grows angrier, falling silent only when Deborah asks Mary to tell the story about Henrietta’stoenail polish.
We must admire Mary for her scientific skill and her empathy towards Henrietta, but on the other hand, she now represents the scientific establishment that swindled the Lackses. This is exactly the kind of unresolvable conflict that Skloot means to display.
Wyche tries to get the state to acknowledge Henrietta, and her efforts pay off. The Maryland State Senate thanks Henrietta, and Representative Robert Ehrlich Jr. honors her in front of the House of Representatives. Wyche next writes to the president of Johns Hopkins, William Brody, asking for acknowledgement of the ethical questions surrounding Hopkins’ treatment of Henrietta. An assistant named Ross Jones eventually replies, and asserts that Hopkins never profited in any way from HeLa.
Despite the many official recognitions of Henrietta, Hopkins still stubbornly refuses to accept any responsibility for its mistreatment of her. This mixed bag of recognition and refusal shows just how difficult it is to get the medical establishment to admit that it has made a mistake.
Rebecca introduces a new character into the narrative: Sir Lord Keenan Kester Cofield: “the cousin of Deborah’s husband’s former stepdaughter, or something like that.” Cofield contacts Deborah, asserting that she needs a lawyer, that she should copyright the name of Henrietta Lacks, and that she should sue Hopkins. Cofield begins researching Henrietta’s records at Hopkins, telling the Lackses that Henrietta’s doctors are guilty of various medical malpractices. Cofield tries to manipulate Deborah into getting him Henrietta’s medical records, but a Hopkins lawyer named Richard Kidwell becomes suspicious, and starts investigating Cofield.
The story of the Lacks family now gets one of its first real villains: Cofield, whose memory terrifies the Lackses up until the day they meet Rebecca. Like others before him, he intends to manipulate the Lackses in order to turn a profit for himself. Of course, his con scheme comes directly from all the publicity that has cropped up around HeLa, Henrietta, and her family—proof of the double-edged nature of the press, and of the consequences that come from having one’s privacy taken away.
Cofield is a fraud who has spent “years in various prisons.” He has brought many frivolous lawsuits over the years, and is notorious within the legal system. When Kidwell learns about Cofield’s background, he contacts Deborah and gets her to “sign a document forbidding Cofield access to her family’s records.” Cofield throws a fit, and then files “a lawsuit against Deborah, Lawrence, Courtney Speed, the Henrietta Lacks Health History Museum Foundation, and a long list of Hopkins officials.”Cofield begins intimidating the Lackses. Deborah panics and breaks down in Speed’s store, saying that Speed has allied with Cofield. Speed, however, is terrified of Cofield too.
Cofield intends to prey on the vulnerable, people like Deborah and Courtney who have no knowledge of the legal system and no access to a lawyer. Although he is a con man and a fraud, his behavior (Skloot implies) is not that different from researchers and doctors who take advantage of their patients’ ignorance and fear in order to get what they want.
As these events unfold, the BBC documentary comes out, and reporters begin contacting Deborah. Deborah doesn’t have answers, and decides to request a copy of Henrietta’s medical records from Hopkins—as well as records for Elsie. She also meets with Kidwell, who pledges that Hopkins will fight off Cofield. They do, and the case is dismissed, but Hopkins still refuses to honor or acknowledge Henrietta in any way.
For once, Hopkins does right by the Lackses, protecting them against Cofield’s lawsuits and giving Henrietta her family’s medical records. By the same token, however, they still refuse to admit any wrongdoing of their own.
Deborah remains deeply paranoid, convinced that Cofield is going to steal her mother’s possessions or records, or even her own cells. Soon, she is only leaving her house to work as a bus driver. A freak accident occurs, however: a boy on the bus attacks her twice, leaving Deborah with a permanent injury. Deborah then stops leaving the house or even answering the phone. She reads her mother’s records, and learns that Elsie ended up in Crownsville. Deborah is afraid that Elsie was experimented on, and grows more suspicious after learning that many of Crownsville’s records have been destroyed. She becomes so distraught that she breaks out in hives. After going to the hospital, she’s told that she almost had a stroke. A few weeks later, Roland Pattillo gets in touch with Deborah to tell her that a reporter—Rebecca—wants to write about Henrietta.
The combination of Cofield, the tragic story of the medical records, and various other stressors in her life make Deborah break down completely, both physically and mentally. Once again, Skloot recounts this episode in order for us to fully understand the human cost of HeLa. Between her troubled family life, her dead mother and sister, and the controversies around HeLa, Deborah has had to deal with far more stress than any one human being should. That she continues to live and to love her family is a testament to her strong moral compass and her personal fortitude—positive attributes that place her at the core of Skloot’s narrative.