The first hint that something if not greater than certainly different than the sum of the book's parts is going on comes on page xiii in the author's forward, "A Few Words About This Book." Although the reader does not recognize its significance at the time, Skloot's explanation of her attempt to capture the dialects of her interviewees is extraordinarily important:
I've done my best to capture the language with which each person spoke and wrote: dialogue appears in native dialects; passages from diaries and other personal writings are quoted exactly as written. As one of Henrietta's relatives said to me, "If you pretty up how people spoke and change the things they said, that's dishonest. It's taking away their lives, their experiences, and their selves." In many places I've adopted the words interviewees used to describe their worlds and experiences. In doing so, I've used the language of their times and backgrounds, including words such as colored. Members of the Lacks family often referred to Johns Hopkins as "John Hopkin," and I've kept their usage when they're speaking.The first part of this explanation makes sense: Skloot wants to capture Henrietta's experience as honestly as possible, but the seemingly tacked-on explanation of the usage "John Hopkin" feels, in retrospect like a preemptive strike against those who might accuse her of racism, or, worse, of exaggerating the family's, for lack of a better word, ignorance. The whole passage takes on new meaning when the reader realizes that Skloot's attempt to capture "dialect" is not just a matter of tone and idiom, but frequently an attempt to impart the ungrammatical usages that commonly characterize the family's speech and writing.
Skloot's epigraph also becomes doubly important in retrospect. Skloot quotes Elie Wiesel from The Nazi Doctors and the Nuremberg Code, saying "We must not see any person as an abstraction. Instead, we must see in every person a universe with its own secrets, with its own treasures, with its own sources of anguish, and with some measure of triumph." Initially I assumed that Skloot had chosen this epigraph because the Nuremberg Code was the first document specifically to address medical experimentation on human subjects as a crime, but as I read further I realized that Skloot had a different purpose in mind. The fact is, the further I read and for reasons that I will make clear shortly, the more foreign Henrietta Lacks and her family seemed to me, so much so that I was having a hard time empathizing with their plight. But Wiesel is clear: "We must not see any person as an abstraction"--to do so is to take the position of the white side of the Lacks family, who deny their black cousins, and so I struggled to live up to Wiesel's edict, even when, for example, Deborah (Henrietta's daughter) casually explained the nerve deafness that plagued her and her siblings as being "on account of the syphilis" (Henrietta's syphilis, that is) as if that were a perfectly normal explanation.
Although Skloot almost always refrains from editorializing, I am sure that she knows exactly how disturbing Henrietta's world must seem (if only from a public health standpoint) to her educated readership. Henrietta grew up in a society in which the incest taboo had more or less ceased to function (or never started). She bore her cousin's baby at fourteen, and married him at eighteen. Her second child suffered from epilepsy, deafness, and severe developmental delays (she was classified as an "idiot"). Under family pressure, Henrietta institutionalized her daughter in a facility where, unbeknownst to her, gruesome experiments were commonly conducted on patients. Skloot does not tell us whether anyone suspected inbreeding as the cause of Elsie's disabilities. Henrietta seems to have been unconcerned, bearing three more children and intending to have more until radiation left her sterile.
Almost as concerning as the incestuous relationships so common in Henrietta's world was the prevalence of male infidelity and promiscuity, as evidenced by the sexually transmitted diseases men brought home to their wives. At the time of her death, Henrietta suffered from syphilis, gonorrhea, and several strains of HPV (one of which almost certainly caused her cancer); there is no evidence whatsoever that Henrietta could have been infected by these diseases by anyone but her husband. If there is any evidence that Henrietta understood how she kept picking up these diseases, let alone their potential detriment to her unborn children, Skloot does not share it.
Skloot lets the irony of the fact that it was Henrietta who inadvertently supplied (without consent or even knowledge) the tissue sample that would soon become the HeLa cell line--probably the biggest boon to medical science in the 20th century--speak for itself. From the time of her "donation" onward, the story stops being about Henrietta so much as it is about (a) the research made possible by her cells, and (b) the horrific experiences undergone by her family when the name and history of the woman who provided HeLa became public knowledge without their consent or comprehension. The research made possible by HeLa is famously vast. HeLa cells were the basis for decades of cancer and genetics research, founded the basis for the Human Genome Project and in vitro fertilization, were blasted into space by both the Russians and the Americans, and were used to test the effects of nuclear weapons on human cells (among other things).
The tragedy of the story is not that Henrietta was mistreated and taken advantage of, although she most certainly was. The tragedy of the story is what happened to her family when their world collided with the world of modern medicine and scientific research years later. When Henrietta's identity became known it became desirable to take samples from her husband and children so as to establish genetic markers. A Chinese postdoctoral student with limited English was assigned with the task of collecting the samples. When she called Henrietta's husband to arrange a meeting, she assumed (whether as a matter of convenience or just logically) that he understood his wife's contribution to modern medicine. Likewise, she assumed that she did not need the informed consent of those to be tested, all the better for her since "informed" consent would have been next to impossible to obtain without making a mockery of the concept. The level of cultural misunderstanding between all parties concerned is practically farcical. The only "cell" Henrietta's family was acquainted with was a jail "cell"--as far as they were concerned they were being tested for the cancer that killed their wife and mother, which suggested that it could be inherited, a misunderstanding that haunted her daughter Deborah and was not corrected until decades later.
Deborah, who has at various times been diagnosed with everything from anxiety to schizophrenia, is the main character of the second half of the book. Her behavior is extremely erratic and, to the outside observer, irrational. What Skloot shows us, however, is that Deborah's behavior is actually based in reason if one takes into consideration the limited information she has along with her level of education. More than most of her family, Deborah personalizes the idea of her mother's "immortal" cells, believing that the cells are actually copies of her mother. When she is told that cancer treatments, nuclear weapons, and the effects of space travel have been tested on her mother's cells, she envisions her actual mother suffering the agonies of these experiments. Likewise, when she reads that her mother's cells have been cloned in London, she combines that information with an understanding of cloning gleaned from the film Jurassic Park and envisions dozens of copies of her mother wandering around London. Deborah is unable to separate fact from fiction, and she reads tabloid horror stories about her mother's cells being combined with animals to create genetic hybrids with the same credibility as the mainstream press. The actual information that might help her is beyond her understanding. One scientist, trying to be helpful, gives her a genetics textbook, which causes more harm than good since, as Skloot explains, Deborah frequently needs to turn to a dictionary to read magazines.
The breakthrough moment of the book--and the moment of slight hope--comes when Deborah realizes that if she and her family had been better educated, they wouldn't have been so easily taken advantage of or become so confused about what was happening to her mother's cells. How could her father, with his four years of formal schooling, have hoped to be anything but befuddled when told that his wife was dead but her cells were immortal? Unsure what a cell was, he took this to mean that some part of his wife was still alive, despite having seen her corpse. Hoping to remedy this situation, Deborah makes elaborate plans to begin taking community college courses, before which she must take remedial classes to advance herself to a tenth grade level. Unfortunately, she doesn't have the money to take any of the relevant classes, and her plan evaporates. Skloot is pleased to report, however, that a few of Henrietta's grand children and great grand children have made it to college, and one even to graduate school.
Ultimately, the story of Henrietta Lacks is the story of her family. Skloot reserves judgment, but the reader can't help but remember that Henrietta and David Lacks were cousins who had five children, all of whom seemed to suffer from deafness and varying degrees of learning disabilities and mental illness. Likewise, when a compassionate researcher explains to Deborah that her mother had several of the HPV strains that cause cervical cancer, she is so relived to discover that the disease is not inheritable that she seems totally uninterested in how women are infected with HPV. The reader cannot help but ask this question, however, and so David Lacks comes off as quite a villain. The tragedy of the book is that the Lacks family was not only confounded by the information they received (much too late) about their mother, but also had no way of knowing what questions they should ask. Hopefully Deborah's epiphany about education marks the beginning of a dramatic new lifestyle for the Lacks family.
