The Immortal Life of Henrietta Lacks

Like the Bible said,' Gary whispered, 'man brought nothing into this world and he'll carry nothing out. Sometimes we care about stuff too much. We worry when there's nothing to worry about.

But I tell you one thing, I don't want to be immortal if it mean living forever, cause then everybody else just die and get old in front of you while you stay the same, and that's just sad.

She's the most important person in the world and her family living in poverty. If our mother is so important to science, why can't we get health insurance?

When he asked if she was okay, her eyes welled with tears and she said, “Like I’m always telling my brothers, if you gonna go into history, you can’t do it with a hate attitude. You got to remember, times was different.

Some things you got to release. Gary said. The more you hold them in, the worse you get. When you release them, they got to go somewhere else. The Bible says He can carry all that burden.

For me, it's writing a book and telling people about this story.

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. —ELIE WIESEL from The Nazi Doctors and the Nuremberg Code

Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.

Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies.

I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s. "There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients of their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at lest on other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.

I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.

Nelson-Rees had since been hired by the National Cancer Institute to help stop the contamination problem. He would become known as a vigilante who published “HeLa Hit Lists” in Science, listing any contaminated lines he found, along with the names of researchers who’d given him the cells. He didn’t warn researchers when he found that their cells had been contaminated with HeLa; he just published their names, the equivalent of having a scarlet H pasted on your lab door.

But today when people talk about the history of Hopkins’s relationship with the black community, the story many of them hold up as the worst offense is that of Henrietta Lacks—a black woman whose body, they say, was exploited by white scientists.

Like I'm always telling my brothers, if you gonna go into history, you can't do it with a hate attitude. You got to remember, times was different.

if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?

They also knew that there was a string of DNA at the end of each chromosome called a telomere, which shortened a tiny bit each time a cell divided, like time ticking off a clock. As normal cells go through life, their telomeres shorten with each division until they’re almost gone. Then they stop dividing and begin to die. This process correlates with the age of a person: the older we are, the shorter our telomeres, and the fewer times our cells have left to divide before they die. By the early nineties, a scientist at Yale had used HeLa to discover that human cancer cells contain an enzyme called telomerase that rebuilds their telomeres. The presence of telomerase meant cells could keep regenerating their telomeres indefinitely. This explained the mechanics of HeLa’s immortality: telomerase constantly rewound the ticking clock at the end of Henrietta’s chromosomes so they never grew old and never died.

I keep with me all I know about you deep in my soul, because I am part of you, and you are me.

The American Type Culture Collection—a nonprofit whose funds go mainly toward maintaining and providing pure cultures for science—has been selling HeLa since the sixties. When this book went to press, their price per vial was $256. The ATCC won’t reveal how much money it brings in from HeLa sales each year, but since HeLa is one of the most popular cell lines in the world, that number is surely significant.

To discourage slaves from meeting or escaping, slave owners told tales of gruesome research done on black bodies, then covered themselves in white sheets and crept around at night, posing as spirits coming to infect black people with disease or steal them for research. Those sheets eventually gave rise to the white hooded cloaks of the Ku Klux Klan.

Henrietta’s cells have now been living outside her body far longer than they ever lived inside it,

Day wouldn’t have understood the concept of immortal cells or HLA markers coming from anyone, accent or not—he’d only gone to school for four years of his life, and he’d never studied science. The only kind of cell he’d heard of was the kind Zakariyya was living in out at Hagerstown. So he did what he’d always done when he didn’t understand something a doctor said: he nodded and said yes.

Only cells that had been transformed by a virus or a genetic mutation had the potential to become immortal.

Since the Common Rule says that research subjects must be allowed to withdraw from research at any time, these experts have told me that, in theory, the Lacks family might be able to withdraw HeLa cells from all research worldwide. And in fact, there are precedents for such a case, including one in which a woman successfully had her father’s DNA removed from a database in Iceland. Every researcher I’ve mentioned that idea to shudders at the thought of it.

Southam’s research was only one of hundreds of similarly unethical studies. Beecher published a detailed list of the twenty-two worst offenders, including researchers who’d injected children with hepatitis and others who’d poisoned patients under anesthesia using carbon dioxide. Southam’s study was included as example number 17. Despite scientists’ fears, the ethical crackdown didn’t slow scientific progress. In fact, research flourished. And much of it involved HeLa.

Genetically speaking, humans are terrible research subjects. We're genetically promiscuous--we mate with anyone we choose--and we don't take kindly to scientists telling us who we should reproduce with. Plus, unlike plans and mice, it takes decades to produce enough offspring to give scientists much meaningful data.

Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge.

Hopkins say they gave them cells away,” Lawrence yelled, “but they made millions! It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?

In 1999 the RAND Corporation published a report (the first and, so far, last of its kind) with a “conservative estimate” that more than 307 million tissue samples from more than 178 million people were stored in the United States alone. This number, the report said, was increasing by more than 20 million samples each year. The samples come from routine medical procedures, tests, operations, clinical trials, and research donations. They sit in lab freezers, on shelves, or in industrial vats of liquid nitrogen. They’re stored at military facilities, the FBI, and the National Institutes of Health.

She’s simply called HeLa, the code name given to the world’s first immortal human cells—her cells, cut from her cervix just months before she died.

Because of patent licensing fees, it costs $25,000 for an academic institution to license the gene for researching a common blood disorder, hereditary haemochromatosis, and up to $250,000 to license the same gene for commercial testing. At that rate, it would cost anywhere from $46.4 million (for academic institutions) to $464 million (for commercial labs) to test one person for all known genetic diseases.