Chapter 22. “The Fame She So Richly Deserves” … 1970–1973
In the spring of 1970, George Gey becomes ill and discovers that he has incurable pancreatic cancer. Gey wanted his lab assistants to create an immortal cell line like HeLa from his tumor, but during surgery, they discovered that his cancer was so widespread that they worried cutting into it would kill him. Still determined to help science, he underwent experimental chemo treatments with terrible side effects.
Shortly before his death, Gey told his assistant Mary that it would be okay to release Henrietta's true name. After Gey died, several of his colleagues decided to write an article about the history of the HeLa cell line, and they uncovered Henrietta's medical records in the process. They also discovered that Henrietta had had a more aggressive type of cancer than they had previously realized (she had an adenocarcinoma instead of an epithelioid carcinoma), which may have explained why her cancer spread so aggressively but wouldn't have necessitated different treatment. Most impressively, this article represented the first time that Henrietta's real name appeared in an article about the HeLa cell line.
In 1972, Richard Nixon signed the National Cancer Act into law, launching the War on Cancer and designating $1.5 billion for cancer research over the next three years. With this flood of new funding, scientists had the resources to tackle the contamination problem—the invasion of HeLa into other cell lines. There was still some debate in the field that this was a problem at all, but scientists such as Walter Nelson-Rees were publishing the names of tainted cell lines as well as the scientists who were using them in research, so there was an impetus to make sure the samples were clean.
Mainstream newspapers began to pick up the story of the contaminated cell line, rousing national interest in the woman behind HeLa. Journalists and scientists began to seek the true identity of Henrietta Lacks.
Chapter 23. “It’s Alive” … 1973–1974
Around the same time, Bobette Lacks is spending time with her friend Gardenia, and she is introduced to Gardenia's brother-in-law, who works at the National Cancer Institute. He is surprised to hear that Bobette's married name is Lacks, and remarks that the cells he works with supposedly come from a woman named Henrietta Lacks. Bobette is shocked and incredulous - this was her mother-in-law's name, but Henrietta has been dead for nearly 20 years. However, when Gardenia's brother-in-law asks if she died of cervical cancer at Hopkins in the fifties, Bobette is certain that this is the same woman.
Bobette is confused by this explanation, and only understands that part of Henrietta is somehow still alive and being experimented on. This recalls the frightening stories she heard about Hopkins doctors kidnapping Black people for experimentation, and Bobette becomes afraid that doctors might come to take Henrietta's children and grandchildren away for experimentation as well. She tells Lawrence that part of his mother is alive; he calls Hopkins attempting to find out what they're doing to his mother, but the receptionist has no idea what he's talking about.
In 1973, a group of researchers gathers at Yale University to begin the mapping of the human genome. Given the contamination problem, they decide that the best way to proceed will be to develop tests that can distinguish HeLa from other cells, and that the best way to accomplish that goal will be to obtain samples from Henrietta's surviving relatives, who share her DNA. Victor McKusick, a Hopkins geneticist, tasks his post-doctoral fellow Susan Hsu with obtaining the samples. Hsu called Day and asked if she could draw blood from him and his children. However, Hsu had recently come from China and did not speak fluent English, and Day was unfamiliar with the fine points of scientific research. Day interpreted Hsu's request as a test for cancer (recall that the doctors who pushed him to sign Henrietta's autopsy form had said this might lead to research that would help his children avoid developing cancer).
Because this was merely a blood draw and Hsu assumed the Lackses were familiar with the research being done with Henrietta's cells, she didn't explain why she was doing this and did not have them sign any consent forms. (At the time, the NIH was still developing guidelines for the use of human tissue in research.)
Day told Deborah that some doctors wanted to draw her blood for a cancer test, and Deborah panicked. She was almost 24, and she knew her mother had grown sick and died when she was not much older. Deborah was terrified that her beloved children would grow up motherless like she had. Still, she agreed to Hsu's blood draw. Deborah's panic grew when she was unable to get her "cancer test" results, and when she came across articles about the Tuskegee syphilis study and Chester Southam's medical experiments. She began to wonder if Henrietta's doctors had killed her, or if doctors were continuing their experiments on her.
McKusick asked Deborah to come into his office to give more blood, and she fearfully accepted, thinking she was still being tested for cancer. Deborah asked him about Henrietta—what had made her sick, what were her cells doing for science, would Deborah die young like her mother had? McKusick explained the experiments being performed on Henrietta's cells, but Deborah couldn't help but picture her mother enduring these terrible experiments.
McKusick gave Deborah a dense and difficult-to-read medical textbook, and Deborah was stunned to find a photo of her mother in it. No one is sure how the photo of Henrietta appeared in the medical textbook. (However, when Rebecca Skloot spoke to McKusick, he said he never recalled meeting Deborah at all.)
In the present day, Rebecca spoke to Hsu, who was stunned that the Lacks family thought she was testing them for cancer. Hsu says that she is grateful to them, and also asks Rebecca to tell them that she wouldn't mind going back and getting another sample of blood from them.
Chapter 24. “Least They Can Do” … 1975
The Lackses first heard about the contamination problem when they were interviewed by Michael Rogers, a young Rolling Stone reporter. Rogers had graduated from college at the age of 19, and had already published two books by his early twenties. He first became interested in Henrietta's story when he saw a piece of graffiti in a medical school bathroom.
Rogers contacted the Lacks family after looking them up in the phone book. When he met them, he found they had no real understanding of what was being done with Henrietta's cells, so he found himself explaining basic science to them. Deborah was upset and anxious, but the men of the family were happy knowing that their mother's cells had helped other people. However, they became angry when they discovered that HeLa cells were being sold for $25 or more a vial. They believed that Gey and Hopkins had stolen her cells to make money (this wasn't technically true - Gey never made any profits from HeLa, though other corporations later did).
The Lackses were angry that strangers were making money off Henrietta's cells while her descendants lived in dire poverty, so they began to give out handouts to customers at Lawrence's store explaining the situation.
Deborah, on the other hand, just wanted to understand what had happened to her mother. She read as much as she could about science, but when she heard about experiments that infected HeLa cells with disease, she couldn't help but think of her mother suffering the terrible symptoms of those diseases.
Michael Roger's Rolling Stone article about the Lacks family was published shortly after news of the Tuskegee study became public knowledge, and made a major impact.
Additionally, McKusick and Hsu published the genetic markers of the Lacks family in the journal Science. Today, this would be illegal under legislation such as GINA (the Genetic Information and Non-disclosure Act), but at the time there was nothing the Lacks family could do about it. However, there was another upcoming legal case that would change the landscape around medical ethics and patients rights forever.
Chapter 25. “Who Told You You Could Sell My Spleen?” … 1976–1988
The same year that Mike Rogers published his article about the Lacks family in Rolling Stone, a surveyor named John Moore was diagnosed with a rare form of leukemia. His doctor referred him to David Golde at UCLA for treatment, and, as part of the standard paperwork, signed a form saying that they hospital could dispose of his tissue through cremation. Moore had his spleen removed and recovered quickly.
Moore was required to fly to UCLA to receive checkups, which he did for the next seven years. Eventually, he grew tired of traveling between his home in Seattle and his doctor in Los Angeles, and asked Golde to refer him to a local physician. Instead, Golde offered to pay for his travel expenses and even find him accommodations in a fancy hotel. Moore began to grow suspicious.
Moore's disquiet grew when he was given a form to sign stating that he voluntarily waived any financial stake in a cell line developed from his tissues. Moore was afraid his treatment would be affected, so he signed the first form. But when he received a second, identical form, he did not sign it. Dr. Golde followed up aggressively seeking his signature, even sending the form to his home address. Moore showed the form to a lawyer, who discovered that Golde had patented a cell line, called Mo.
The patenting of biological materials was in flux: in 1980, the Supreme Court ruled in favor of Ananda Mohan Chakrabarty, who had created a bacterium that could consume oil. Since Chakrabarty had used "human ingenuity" to develop his creation, the Court decided that the bacterium could be patented.
Moore's cells were unique. They happened to carry a rare virus that made them ideal for testing an HIV vaccine, and if Moore had known this, he would have actually sold them to pharmaceutical companies himself.
A man named Ted Slavin had actually done this in the 1970s. Because he was a hemophiliac, he had repeated blood infusions and was exposed to the Hepatitis B virus before the advent of blood bank testing. Because of the high number of antibodies to Hepatitis B in his blood, which was necessary for the testing and development of a Hepatitis B vaccine, he was able to sell his serum for up to ten dollars a milliliter. This was extremely helpful for Slavin because he was often unable to work due to his hemophilia. Slavin was able to do this because his doctor had let him know that his blood could be useful in research.
Slavin was determined to cure Hepatitis B, so he started a company called Essential Biologicals, in which other people with similar conditions could market their biological materials.
In 1984, Moore sued Golde for patenting a cell line created without his consent. The scientific community expressed concern about the impact on research progress if cell lines and tissues were considered patient property, despite the fact that there was a long history of lawsuits within the scientific community over this very issue of ownership.
Moore's case was initially thrown out of court, but Moore appealed the case and won. Golde then advanced the case, which went all the way to the Supreme Court of California, which ruled in Golde's favor. The court stated that once tissues were "transformed" by "human ingenuity," they no longer belonged to the original donor. However, the court also stated that Golde had violated the patent by not gaining informed consent and disclosing his intentions.
Though this could have changed their approach to gaining recognition for Henrietta's contributions, the Lacks family had no idea that this was going on.
Chapter 26. Breach of Privacy … 1980–1985
Unlike her mother, Deborah lived past the age of thirty and married James Pullum, a mechanic who eventually became a preacher. Pullum suggested Deborah get a lawyer to advance her mother's case, but Deborah just wanted to get in with her life.
The Lacks family was struggling. Zakariyya, finally out of prison, was homeless and participated in medical experiments at Hopkins to gain a small income. He eventually quit when researchers discussed giving him injections; he was afraid they would infect him with HIV. Sonny was engaged in a number of illegal activities, and soon found himself in jail. Deborah’s son Alfred was also causing trouble - he had been repeatedly arrested for petty offenses, and had even been kicked out of the Marines. Alfred was currently living at home, doing and dealing drugs.
In the midst of this chaos, a writer named Michael Gold published a book entitled A Conspiracy of Cells, which discussed the HeLa contamination problem. However, Gold had reprinted portions of Henrietta’s medical records without the consent of her family. The records discussed the intimate details of Henrietta’s disease as well as her agonizing end, and when Deborah read about them, she cried for days. No one in the Lacks family ever learned how Gold had gotten ahold of Henrietta’s medical records. Gold himself suggested that one of the doctors had given him access. He said he wanted to add these personal touches to include some “interesting color” to his story.
Today, publishing such details from a medical record would be highly illegal, but at the time, there were no laws in Maryland forbidding such a breach of confidence.
Deborah begins to learn about the uses to which her mother's cells were put, but she is confused about what this research entails and what it means. Deborah is unfamiliar with cellular biology, and is also playing a game of telephone in which information is relayed through multiple increasingly unreliable sources. On page 223, "When she found out that scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation." While it is technically true that some part of her mother is alive, Henrietta's cells in a petri dish do not share the memories or personality of Henrietta Lacks, nor can they feel pain.
Chapter 23 introduces a serious moral research issue. Hsu did not ask for consent and caused a great deal of unnecessary terror for Deborah because she did not explain that she wasn't testing for cancer. Understandable. She was conducting intricate scientific research in a language she had only begun to speak; she also describes being deeply intimidated by McKusick, a man who held her career in his hands. (the main cause of cervical cancer is a virus caused HPV; it is generally not considered genetic, so Deborah was probably no more at risk for developing cervical cancer than anyone else in the wider population).
Chapter 23 also begins a new section, "Immortality," which describes the continued impact of Henrietta's cells, life, and legacy. The use of the term "immortality," bandied about by both scientists and members of the Lacks family, calls into question what it actually means to be immortal. Henrietta's cells continue to divide in culture and her memory continues on in the lives of her family members, but she as a person has ceased to exist. Does this still count as immortality?
This section raises the theme of paranoia that shapes the experience of the Lacks family throughout the book. Deborah is deeply paranoid that she will die young of cancer like her mother did, and Hsu never explains the purpose of the tests she is conducting, leading Deborah to assume that they are cancer tests. Additionally, Deborah and the rest of the family find out intimate details of their mother's death from a book published by a stranger. Though sometimes frustrating for Skloot and other characters in the book, the paranoid nature of Deborah and her family are reasonable reactions given the circumstances. Their paranoia is a direct consequence of the lies and mistreatment they’ve received.
The research of McKusick and Hsu (especially the article that they published detailing the Lacks family tree) highlights the challenges of genetic research. In genetics, one person's test results can give information about the disease risks of a whole family, which can prompt discrimination in healthcare and employment based on test results from a different person. Modern legislation such as GINA (the Genetic Information and Non-disclosure Act) attempts to protect individuals from discrimination on the basis of genetic status, but such discrimination is often difficult to prove.