In other words, Lackss 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 patients 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 Moores 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 doctors 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, Lackss 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 didnt 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.
Lackss 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.
The discussions that Skloot had with Lackss children underscore the ways in which power, money, and knowledge are related to each other and the ways in which this nexus dooms many people to sickness and early death. There are large sections of the book devoted to describing Deborahs sister Elsie, who died as a teenager in a mental institution. Elsies case brings up for Deborah — and for Skloot — all of the same issues as does her mothers case. Deborah wants to know — and yet knows there are no answers — how being black and poor and female affects being sick or well.
An autopsy proved that the cancer had spread throughout her body. Lacks was buried in the family cemetery in Lackstown. The exact site of her grave is unknown, although surviving family members believe that Lacks was buried close to her mother, whose grave is marked.
Lackss life — short and full of hard work and childbearing and venereal disease given to her by her husband — was all too typical of black women of her class and region. Certainly she deserved better from life.
In the shadow of this story is another one — and one that is far more horrifying. The Tuskegee syphilis experiment, carried out by the U.S. Public Health Service between 1932 and 1972, saw nearly 400 poor black men — sharecroppers like Lacks — intentionally denied treatment for syphilis. The men were given free meals for participating in the experiment along with free medical exams. But they were never told that what exactly was the nature of their illness, nor were their sexual partners warned about their own risk.
The men were also given free burials.
Lacks was given medical treatment that was believed at the time to be effective. Her lack of consent to the taking of her cells was standard for the time. And yet, of course, in her story one hears the echoes of the Tuskegee victims. And in the protests of her descendents we hear the cry of all people in many places and at many times who have seen others with more education and more resources grow rich off the bodies of the working poor.
Skloots, Rebecca. The Immortal Life.