In 1973, Bobbette is visiting with her friend Gardenia and Gardenia’s brother-in-law, who lives in DC. Bobbette tells the brother-in-law that she works at Baltimore City Hospital, and he replies that he works at the National Cancer Institute. Upon hearing her last name, he explains that he’s been working with a cell culture in his lab originating from a woman named Henrietta Lacks. Bobbette replies that Henrietta Lacks was her mother-in-law, but that she’s been dead for twenty-five years. The brother-in-law, however, says that the cells in question come from a woman named Henrietta who died of cervical cancer in the fifties at Johns Hopkins.
This is a huge turning point in the narrative: the moment at which the Lackses finally become fully aware of what has happened to Henrietta’s cells. It is ironicthat the news should come through Bobbette, the only member of the Lacks clan not related by blood to Henrietta (and whom Henrietta never met).
Bobbette is shocked and appalled; she flashes back to the Tuskegee syphilis study, and begins to panic, thinking that researchers will soon come for Henrietta’s children and grandchildren. Bobbette returns home, yelling to Lawrence that part of Henrietta is still alive. Lawrence contacts Hopkins, and he explains that he’s Henrietta’s son, and says that they still have “some of her alive in there.”
Bobbette’s panic, though dramatic, makes sense considering the history of racist medical experiments, and all we know about the Lackses’ mistrust of the medical system. Lawrence, meanwhile, demonstrates how difficult it still is for the Lackses to get any information out of Hopkins.
In June 1973, a group of researchers gathers at Yale to begin a project that will lead to the Human Genome Project. As they discuss how to stop HeLa contamination, they realize that if they find genetic markers specific to Henrietta, they will be able to find out which cells are Henrietta’s, and which are not. Doing so will necessitate collecting DNA from Henrietta’s children and husband. Victor McKusick is present, and says that he can help. Since the Lackses are still patients at Hopkins, they will be easy to find.
As the Lackses begin to learn more about the medical establishment and HeLa, the medical establishment, in turn, begins to become more interested in the Lackses. The scientists involved seem to display no awareness that the news of HeLa might come as a shock to the Lackses—they are thinking only about their own research, rather than the human cost.
McKusick deputizes this task to a doctoral fellow named Susan Hsu. When she gets home from the conference, Hsu calls Day to see if she can draw blood from the Lackses. Day believes that they want to test the children for the cancer that killed Henrietta. Hsu, however, says that she didn’t promise any such thing. Instead, McKusick and Hsu want to test the Lacks family for different genetic markers in order to eventually develop a test to identify Henrietta’s cells.
Once again, a fundamental misunderstanding develops between the Lacks family and the medical establishment. The Lackses believe—understandably—that they might be susceptible to the illness that killed their mother. The researchers, meanwhile, are thinking not at all about helping the Lacks family, but primarily about getting the samples they want.
In the present day, Rebecca asks McKusick whether anyone ever attempted to get informed consent from the Lackses. He responds that it’s unlikely that much effort was expended. Susan Hsu adds that they never gave the family a consent form, because you don’t need that to draw blood.
Even in the present day, the doctorsSkloot seeks out seem to demonstrate a complete lack of understanding about how used and betrayed the Lacks family feels.
Rebecca explains that during this time period, research oversight was changing quickly. In response to several unethical studies, the Department of Health, Education, and Welfare had recommended “new Protection of Human Subjects regulations that would require, among other things, informed consent.”
Once more, HeLa’s journey is incredibly relevant to the medical history of the day—this time, because of the issue of informed consent, which is increasingly becoming a hot topic in the medical community.
After Day talks with Susan Hsu, he calls his children, telling them to gather at the house so that Hopkins doctors can test their blood for cancer. Deborah, now twenty-four, is terrified, believing that she may die like her mother, leaving behind two young children.
We again see the real human costs of the Hopkins doctors’ failure to adequately inform the Lacks family—Deborah, who already suffers from anxiety, becomes convinced that she will die of cancer.
A few days later, the family allows Susan Hsu and her colleagues to draw blood from them. Afterwards, Deborah repeatedly calls Hopkins to ask about her “cancer results,” but no one knows what she is talking about. A short while after, Hsu writes to Lawrence asking if someone can go to Zakariyya’s prison to collect blood from him. Along with her letter, she encloses a copy of the article about George Gey and HeLa written by McKusick and Howard Jones, but no one in the family remembers ever seeing such a piece.
The misunderstandings continue, as Hopkins seems interested only in collecting Lacks family blood, rather than expending any effort to inform the family about what they are actually trying to do. As the stories of the Lackses and the doctors diverge, it is impossible to know whom to believe.
Deborah becomes obsessed with the idea that she has cancer, and she can’t stop picturing researchers doing terrible things to her mother; the legacy of researchers abusing African Americans only makes her more fearful. When she learns about Southam’s experiments, she begins worrying that McKusick and Susan Hsu are trying to give the Lackses cancer. She begins asking Day questions about Henrietta’s death, and his answers only make her more suspicious. Eventually, a researcher from McKusick’s office calls Deborah to ask if she will give more blood. She agrees, thinking that she can get more information about her mother.
Skloot here begins to give readers evidence of Deborah’s deep paranoia and fear—it is vital, however, that we understand how these feelings come from a deep-seated of anxiety, exacerbated by having been lied to and ignored by the medical establishment for years. Although Deborah attempts to inform herself through research, the very real evidence of medical racism only makes her more fearful about what fate the doctors at Hopkins have planned for her.
Deborah arrives in McKusick’soffice in June 1974, four days before a new federal law goes into effect requiring informed consent for all federally funded research. Many researchers, have complained that collecting blood and tissue should be exempt from the law, but their requests are denied. Rebecca explains that McKusick’s contact with the Lacks family “coincided with the beginning of a new era of genetic research, in which the concept of risk to patients would change completely.” Suddenly, a single needle stick could expose patients’ genetic information—their privacy was at stake.
The story of HeLa now coincides with another groundbreaking field of science: that of genetic research, which brings up entirely new fears about medical privacy. The careless way that the researchers in question treat the Lacks family’s genetic information makes clear what little attention doctors were giving to these vital ethical issues.
Deborah meets McKusick when she goes to Hopkins to give blood. McKusick tells her that “Henrietta has made an important contribution to science.” Deborah begins to ask him questions, wanting to know whether she is “going to die young like her mother.” McKusick instead explains some of the innovations derived from Henrietta’s cells, from space missions to atomic bomb testing. Deborah begins to imagine “her mother on the moon and being blown up by bombs.” She wonders whether her mother can still feel pain. When she asks McKusick for more explanation, he gives Deborah a genetics textbook and his phone number, and tells her to call him to give more blood. Then he shows Deborah a picture of Henrietta in the textbook, and shows her a paragraph about HeLa.
At last, it seems as if Deborah will get some answers, as she directly confronts Victor McCusick at Hopkins. Even during this face-to-face meeting, however, McCusick seems to fundamentally misunderstand how terrified Deborah is about getting cancer, and how little she knows about medical ideas that he takes for granted. By failing to see beyond his own educated worldview, McCusick fails Deborah as well. He does not lessen her fears, but only heightens them.
Deborah finds the book impossible to understand, but fixates on the photograph within it, wondering how McKusick got a hold of it. When Rebecca talks to him years later, McKusick doesn’t remember the photo’s origin, but supposes that the Lackses must have given it to a doctor at Hopkins, like Howard Jones. He also doesn’t remember speaking to Deborah—he says that only Susan Hsu did.
Another mystery emerges: how exactly doctors got hold of the fateful picture of Henrietta (the same one that Rebecca stares at during the book’s beginning). Like many other episodes, this one shows how little many doctors cared about their patients’ privacy or consent not so long ago.
Susan Hsu is shocked when Rebecca tells her that the Lackses believed that they were being tested for cancer. She wants Rebecca to tell the Lackses that she is grateful to Henrietta, and that they should be proud. She adds that she could learn even more today by testing the family’s blood. She wants Rebecca to ask them if they’d be willing to donate some more.
Dr. Susan Hsu at least shows some remorse about how misinformed she left the Lackses in the fifties. At the same time, though, she displays a shockingly tone-deaf response when she asks to take more Lacks blood.