Henrietta Lacks an Unasked-For Immortality

Henrietta Lacks

An Unasked-for Immortality

Most of us dream about immortality at some point. Depending on our beliefs about human nature and the existence of a human soul, we think with more or less certainty about what it would be like for our essence to go on forever. We try to understand what it would mean if what is unique about us somehow existed beyond our death. Henrietta Lacks, a poor black woman who lived and worked as a sharecropper in the first half of the last century, may well have thought about life after death. But it highly unlikely -- indeed, barely within the realm of possibility -- that she ever imagined the kind of immortality that she would achieve.

Author Rebecca Skloot became fascinated by Lacks's story and spent years trying to understand the relationship between the tobacco farmer, who died at age 31 in 1951, and one of the most important breakthroughs in medical research in the twentieth century. The book that Skloot wrote about Lacks is thus a detective story on two different levels. One level tells the story of the medical science involved -- science that was simultaneously unable to save Lacks's life while being able to create a radically new tool for treatment. The second level of this dual detective story is Skloot's effort to find out the facts about what actually happened to Lacks and how Lacks's death and contributions to medicine have continued to affect her family through the present.

Lacks was -- without either her knowledge or her consent -- the donor of cells that were cultured in a lab to produce a self-perpetuating cell line that would hold important clues to creating a vaccine for polio and treatments for cancer among other important medical questions. Lacks's remarkable personal history -- a history that in many ways affects each one of us -- gives us a glimpse into the terrible ways in which science, medicine, and power can come together.

It was not until the 1970s that her family was made aware of the fact that something unique to her cells allowed researchers to make advances that had been impossible until Lacks's cells became available. It was during the 1970s that researchers contacted some surviving family members to ask for cell samples to see if some of the characteristics that had been present in Lacks's tumor were also present in the cells of the bodies of her descendents. The family members then began to question what had happened to Lacks that researchers knew about their forebear and wanted more familial cells.

No other family members did -- which was probably to their advantage given the qualities of the tumor, which doctors described as growing at a "terrifying" rate. It was this same "terrifying" rate of growth that made Lacks's cells so valuable in the lab as well as so profitable. That fact -- that so many researchers have made a profit off the biological inheritance of a poor black woman without ever having paid her family any portion of the profits -- is also a part of what makes this story compelling.

Skloot's book is a description of the odyssey of the family as they tried to come to terms with and to understand what had happened to their forebear. Skloot narrates how Henrietta's daughter Deborah, for example, worried that somehow her mother still hurt when her cells were shot into space as part of an experiment to test the effects of gravity on cells. And all of the family wondered why they couldn't afford health insurance and health care when their relative's cells -- their own DNA -- was making so much money for so many people and reducing the misery of so many other families.

Although she did so unknowingly, Lacks gave the worlds of science and medicine the first immortal cell line, something that researchers had been trying to develop without any success for years. The discovery and induction of an immortal cell line has vital implications for a range of medical research and treatments. Lacks was first treated by gynecologist Dr. Howard Jones and later by surgeon Lawrence Wharton, Jr., and by George Otto Gey. It was Gey who extracted cells from Lacks's tumor that he and other researchers were able to coax into a perpetual line of reproduction. These cells would continue to reproduce indefinitely.

This may seem simply like what all cells do (if we think back to our high school biology). But what in fact happens to most cells is that they divide for a period of time and then begin to fail. Immortal cell lines exist when there is no speed up in cell death as the line gets older. A cell line that is immortal is not only one that does not die, it is one that does not age.

Skloot makes it clear in the book that the doctors who took samples of Lacks's cells -- some from her tumor, some from adjacent, still healthy tissue -- and the researchers who cultivated them had no idea at the time that Lacks's cells would have the properties for which they had been so unsuccessfully searching for decades. Not that such fore-knowledge would probably have made any difference: They would in all likelihood have proceeded exactly the way that they did. There was no sense among the medical or research staffs that Lacks had a claim to her own cells.

It would turn out that Lacks's cells were incredibly valuable: The attractions of such an immortal cell line should be clear. Much medical research (as well as more general scientific research that may be relatively distant from applied medical research) depends on healthy cells as the starting point of any reliable research. If a scientist begins with a cell line that will die out relatively quickly, the research project that the scientist is engaged in may fail not because the treatment or intervention being investigating is invalid but simply because the potency of the cells failed before the treatment could run its course.

As soon as Lacks's cells began to show promise of metabolic immortality, the researchers involved became swept up in the medical possibilities. Skloot makes it clear in her account that the researchers involved never meant to act with disrespect towards Lacks. Rather, Lacks does not seem to have existed as a real person to them. Once they had her cells, the researchers seem never to have spent a moment's concern about the person from whom the cells were taken. The way in which Lacks was treated epitomizes the ways in which humans are dissected (both literally and metaphorically) into easily objectifiable parts by medical research.

The science of the immortal cell line -- called the HeLa immortal cell line, using an abbreviation of Henrietta Lacks's name -- began when the sharecropper began to feel internal pain that worsened when she had sex. After seeing her local doctor after she began bleeding vaginally, she was sent to a hospital miles from her home. She was forced to go to a distant hospital because of the prejudice rampart in Southern society that saw blacks as deserving little compassion in terms of their treatment in society. Skloot reminds the reader that in the era of Jim Crow in which Lacks spent her entire life, a black patient showing at a whites-only hospital could well be left to die in the parking lot.

Skloot makes it clear again and again that this is a world in which poor black Southern women had almost no voice in society. Whether Lacks wanted to contribute cells for medical research was not at issue. This may seem shocking to us, but (while in no way denying the ways in which women like Lacks were discriminated against in her own society) it is important to put this experience in context. Certainly, Lacks should have been consulted about whether some of her cells could have been taken to be given to a researcher that she had never met to do with however he liked.

Certainly. But patients were and are routinely mined for their cells in the course of treatment. If a person were to go into a hospital today to receive surgery for cervical cancer treatment, she would be subject to the same kind of biological theft that Lacks suffered. There would be an important difference, or at least a difference: In the voluminous paperwork that a person fills out when being admitted to a hospital, there is in most cases a release that biological material (from blood to cancerous cells to hair follicles) that is taken from a patient during the course of any treatment becomes the property of the hospital or doctor.

Skloot tells her readers that a patient with a different demographic background -- one who was white and wealthy, for example -- would also not have been asked to give her consent. Informed consent laws were not on the books at the time that Lacks was treated: The phrase itself was not used until 1957, when it was first cited in a court case.

In other words, Lacks's cellular content was taken without her consent, but this would have been the case for a wealthy white woman in the North. This does not make what happened to her morally right, of course, but it is important to remember that what happened to her was not simply because she was poor, female, black, and Southern. The fact that she died from her disease may have been affected by her social status because it limited her ability to get timely medical care. But even this statement must be made cautiously: Her cancer was a very aggressive one and would in all likelihood have proved fatal, especially given the knowledge of the disease at the time and the treatments then available to any woman.

A more recent case demonstrates that little has changed in terms of patient's legal rights to their tissues. In the 1980s, researchers removed the spleen of a leukemia patient named John Moore. His doctor recognized that there was significant economic potential in Moore's splenic cells and developed a cell line, patented his invention, and licensed it for hundreds of thousands of dollars. The doctor continued to take additional blood and cell samples from Moore without ever revealing to the patient the doctor's clear economic interest in the procedures. Currently, the "Mo" cell line has a value of about $3 billion.

When Moore went to the courts in an effort to claim some of the profits from his tissue and DNA, the California Supreme Court in 1990 ruled that Moore had no economic claim whatsoever in any profit derived from his discarded body parts.

In some measure, Lacks's case is so striking because her contributions to medicine were so great in distinct contrast to her own circumstances. She was a woman who lived in terrible poverty with very little contact with the professional world that her cells -- but never she -- would enter. Skloot tells us that waking into the hospital was for Lacks like "entering a foreign country where she didn't speak the language." It was also a world in which no one ever thought to translate what was happening into a language that would allow Lacks access to her own life.

Lacks's case is compelling because of the suffering that she underwent even as her cells were dividing and dividing their way to immortality in lab dishes. (Over twenty tons of cells have been grown from the original biopsy and over 11,000 patents have been issued on discoveries and inventions derived from the HeLa cell line.)

It is important to note that Lacks seems to have been given appropriate medical care. When her tumor was confirmed as cancerous, she was treated with radium tube inserts that were sewn into her cervix. This was the standard treatment at the time. When she continued to worsen, she was treated with antibiotics (she had both syphilis and gonorrhea). She was also given X-ray treatments for the cancer (also standard for the time). As her pain worsened and she weakened, Lacks returned to the hospital and demanded to be admitted. She was and stayed in the hospital for the next two months, being treated for both the cancer and associated illnesses. She would die in the hospital at age thirty-one, leaving behind her five children -- the first of whom had been born to her when Lacks was only fourteen.