The Immortal Life of Henrietta Lacks

by Rebecca Skloot

But a few people took Gartler seriously: before leaving the conference, Stevenson met several of the top cell culturists for lunch. He told them to go back to their labs after the conference and start testing cells for the G6PD-A genetic marker, to see how widespread this problem might be. Many of their cell lines tested positive, including the skin cells George Hyatt had transplanted onto a soldier’s arm years earlier. Since Hyatt had no HeLa cells in his lab at the time, the cells in his experiment must have been contaminated before they arrived. And though few realized it, the same thing was happening in laboratories around the world.

Still, many scientists refused to believe HeLa contamination was real. After the conference where Gartler dropped what became known as “the HeLa bomb,” most researchers kept right on working with the cells he’d said were contaminated. But Stevenson and a few other scientists realized the potential scope of the HeLa contamination problem, so they began working to develop genetic tests that could specifically identify HeLa cells in culture instead of just testing for the presence of G6PD-A. And those genetic tests would eventually lead them to Henrietta’s family.

“Scientists can even grow corneas now,” I told him, reaching into my bag for an article I’d clipped from a newspaper. I handed it to him and told him that, using culturing techniques HeLa

helped develop, scientists could now take a sample of someone’s cornea, grow it in culture, then transplant it into someone else’s eye to help treat blindness.

“Oh, well, actually, it’s not her cells being put into people’s eyes,” I said, stammering. “Scientists are using technology her cells helped develop to grow other people’s corneas.” “That’s a miracle,” Sonny said. “I didn’t know about that, but the other day President Clinton said the polio vaccine is one of the most important things that happened in the twentieth century, and her cells involved with that too.”

Bobbette seemed like a loud person being quiet, like a woman with an enormous laugh and temper who might erupt with either at any moment. She exuded Don’t mess with me, her face stern and staring straight ahead. She knew why I was there, and had plenty to say on the subject, but seemed utterly exhausted at the idea of talking to me, yet another white person wanting something from the family.

The Lackses aren’t the only ones who heard from a young age that Hopkins and other hospitals abducted black people. Since at least the 1800s, black oral history has been filled with tales of “night doctors” who kidnapped black people for research. And there were disturbing truths behind those stories.

But night doctors weren’t just fictions conjured as scare tactics. Many doctors tested drugs on slaves and operated on them to develop new surgical techniques, often without using anesthesia. Fear of night doctors only increased in the early 1900s, as black people migrated north to Washington, D.C., and Baltimore, and news spread that medical schools there were offering money in exchange for bodies. Black corpses were routinely exhumed from graves for research, and an under ground shipping industry kept schools in the North supplied with black bodies from the South for anatomy courses. The bodies sometimes arrived, a dozen or so at a time, in barrels labeled turpentine.

But the history of Hopkins Hospital certainly isn’t pristine when it comes to black patients. In 1969, a Hopkins researcher used blood samples from more than 7,000 neighborhood children—most of them from poor black families—to look for a genetic predisposition to criminal behavior. The researcher didn’t get consent. The American Civil Liberties Union filed suit claiming the study violated the boys’ civil rights and breached confidentiality of doctor-patient relationships by releasing results to state and juvenile courts. The study was halted, then resumed a few months later using consent forms.

And in the late nineties, two women sued Hopkins, claiming that its researchers had knowingly exposed their children to lead, and hadn’t promptly informed them when blood tests revealed that their children had elevated lead levels—even when one developed lead poisoning. The research was part of a study examining lead abatement methods, and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels. Initially, the case was dismissed. On appeal, one judge compared the study to Southam’s HeLa injections, the Tuskegee study, and Nazi

research, and the case eventually settled out of court. The Department of Health and Human Services launched an investigation and concluded that the study’s consent forms “failed to provide an adequate description” of the different levels of lead abatement in the homes. 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 wors...

“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?”

(Her syphilis, it turns out, could have been a factor as well—syphilis can suppress the immune system and allow cancer to spread faster than normal.)

“The biopsy … has secured for the patient, Henrietta Lacks as HeLa, an immortality which has now reached 20 years. Will she live forever if nurtured by the hands of future workers? Even now Henrietta Lacks, first as Henrietta and then as HeLa, has a combined age of 51 years.”

“Those cells in my lab have to be hers,” he said. “They’re from a black woman named Henrietta Lacks who died of cervical cancer at Hopkins in the fifties.”

The geneticists at the conference were thrilled. If they had access to DNA from Henrietta’s children, they could not only solve the contamination problem but also study Henrietta’s cells in entirely new ways. McKusick agreed, so he turned to one of his postdoctoral fellows, Susan Hsu, and said, “As soon as you get back to Baltimore, get this done.”

McKusick didn’t give Hsu instructions for explaining the research to the Lackses. All she knew was that Victor McKusick had told her to call the family. “He was like a god,” Hsu told me years later. “He was a famous, famous man, he trained most of the other famous medical geneticists in the world. When Dr. McKusick said, ‘You go back to Baltimore, get this blood drawn,’ I did it.”

McKusick was a renowned geneticist who’d founded the world’s first human genetics department at Hopkins, where he maintained a catalog of hundreds of genes, including several he’d discovered himself in Amish populations. He compiled information about known genes and the research done on them into a database called Mendelian Inheritance in Man, the bible of the field, which now has nearly twenty thousand entries and is still growing.

When she asked McKusick to explain more about the cells, he gave her a book he’d edited called Medical Genetics, which would become one of the most important textbooks in the field.

Cell lines are swapped, traded, forwarded, begged and borrowed among research institutions around the world. … The institutional sources of cells now range from [government]-supported facilities like Nelson-Rees’s to commercial outfits with toll-free 800 numbers, from whom one can order, for about $25, a tiny glass vial of HeLa cells.

Since they gone ahead and taken her cells and they been so important for science, Deborah thought, least they can do is give her credit for it.

On March 25, 1976, when Mike Rogers’s Rolling Stone article hit newsstands, it was the first time anyone had told the true story of Henrietta Lacks and her family, the first time the mainstream

media had reported that the woman behind HeLa was black. The timing was explosive. News of the Tuskegee study was still fresh; the Black Panthers had been setting up free clinics for black people in local parks and protesting what they saw as a racist health-care system; and the racial story behind HeLa was impossible to ignore. Henrietta was a black woman born of slavery and sharecropping who fled north for prosperity, only to have her cells used as tools by white scientists without her consent. It was a story of white selling black, of black cultures “contaminating” white ones with a single cell in an era when a person with “one drop” of black blood had only recently gained ...

Rogers’s article caught the attention of several other journalists, who contacted the Lackses. In the three months following Rogers’s story, Jet, Ebony, Smithsonian, and various newspapers published articles about Henrietta,...

Meanwhile, Victor McKusick and Susan Hsu had just published the results of their research in Science: in a table that took up about half of a page, under the headings “Husband,” “Child 1,” “Child 2,” “H. Lacks,” and “HeLa,” McKusick, Hsu, and several coauthors mapped forty-three different genetic markers present in DNA from Day and two of the Lacks children, and used those t...

A lawyer might have told the Lackses they could sue on the grounds of privacy violation or lack of informed consent. But the Lackses didn’t talk to a lawyer—they didn’t even know anyone had done research on their DNA, let alone published it. Deborah was still waiting to hear the results of what she thought was her cancer test, and Sonny and Lawrence were still busy trying to figure out how to get money from Hopkins. They didn’t know that on the other side of the country, a white man named John Moore was about to begin fighting the same battle. Unlike the Lacks family, he knew who’d done what with his cells, and how much money they’d made. He also had the means to hire a lawyer.

I (do, do not) voluntarily grant to the University of California all rights I, or my heirs, may have in any cell line or any other potential product which might be developed from the blood and/or bone marrow obtained from me.

At first, Moore circled “do.” Years later, he told Discover magazine, “You don’t want to rock the boat. You think maybe this guy will cut you off, and you’re going to die or something.”

But Moore suspected Golde wasn’t being straight with him, so when the nurse gave him an identical form during his next visit, Moore asked Golde whether any of the follow-up work he was doing had commercial value. According to Mo...

Soon the same form appeared in Moore’s mailbox at home with a sticker that said “Circle I do.” He didn’t. A few weeks later he got a letter from Golde telling him to stop being a pain and sign the form. That’s when Moore sent the form to a lawyer, who found that Golde had devoted much of the seven years since Moore’s surgery to developing and marketing a cell line called Mo.

Moore told another reporter, “It was very dehumanizing to be thought of as Mo, to be referred to as Mo in the medical records: ‘Saw Mo today’ All of a sudden I was not the person Golde was putting his arm around, I was Mo, I was the cell line, like a piece of meat.” Weeks before giving Moore the new consent form—after years of “follow-up” appointments—Golde had filed for a patent on Moore’s cells, and several extremely valuable proteins those cells produced. Golde hadn’t yet sold the rights to the patent, but according to the lawsuit Moore eventually filed, Golde had entered into agreements with a biotech company that gave him stocks and financing worth more than $3.5 million to “commercially develop” and “scientifically investigate” the Mo cell line. At that point its market value was estimated to be $3 billion.

And patenting cell lines didn’t require informing or getting permission from the “cell donors.”

Scientists are quick to point out that John Moore’s cells were exceptional, and few cell lines are actually worth patenting. Moore’s cells produced rare proteins that pharmaceutical companies could use to treat infections and cancer. They also carried a rare virus called HTLV, a distant cousin of the HIV virus, which researchers hoped to use to create a vaccine that could stop the AIDS epidemic. Because of this, drug companies were willing to pay enormous sums to work with his cells. Had Moore known this before Golde patented them, he could have approached the companies directly and worked out a deal to sell the cells himself.

In the early 1970s a man named Ted Slavin had done precisely that with antibodies from his blood. Slavin was born a hemophiliac in the 1950s, when the only available treatment involved infusions of clotting factors from donor blood, which wasn’t screened for diseases. Because of that, he’d been exposed to the hepatitis B virus again and again, though he didn’t find out until decades later, when a blood test showed extremely high concentrations of hepatitis B antibodies in his blood. When the r...

Researchers around the world were working to develop a vaccine for hepatitis B, and doing so required a steady supply of antibodies like Slavin’s, which pharmaceutical companies were willing to pay large sums for. This was convenient, because Slavin needed money. He worked odd jobs waiting tables and doing construction, but he’d eventually have another hemophilia attack and end up unemployed again. So Slavin contacted l...

Slavin started selling his serum for as much as ten dollars a milliliter—at up to 500 milliliters per order—to anyone who wanted it. But he wasn’t just after money. He wanted someone to cure hepatitis B. So he wrote a letter to Nobel Prize-winning virologist Baruch Blumberg, who’d discovered the hepatitis B antigen and created the blood test that found Slavin’s antibodies in the first place. Slavin offered Blumberg unlimited free use of his blood and tissues for his research, which began a years-long partnership. With the help of Slavin’s serum, Bl...

Slavin realized he probably wasn’t the only patient with valuable blood, so he recruited other similarly endowed people and started a company, Essential Biologicals, which eventually merged with another, larger biological-product corporation. Slavin was only the first of many who have since turned their bodies into businesses, including nearly tw...

Moore, however, couldn’t sell the Mo cells because that would have violated Golde’s patent. So i...

UCLA for deceiving him and using his body in research without consent; he also claimed property rights over his tissues and sued Golde for stealing them. With that, he became the first person to legally stake a...

When Judge Joseph Wapner, most famous for being the judge on The People’s Court television show, ended up refereeing the depositions, Moore figured no one would take the case seriously. But scientists worldwide panicked. If tissue samples—including blood cells—became patients’ property, researchers taking them without getting consent and property rights up front would risk being charged with theft. The press ran story after story quoting lawyers and scientists saying that a victory for Moore would “create chaos for researchers” and “[sound] the death knell to the university physician-scientist.” They called it “a threat to the sharing of tissue for researc...

Ultimately the judge threw Moore’s suit out of court, saying he had no case. Ironically, in his decision, the judge cited the HeLa cell line as a precedent for what happened with the Mo cell line. The fact that no one had sued over the growth or ownership of the HeLa cell line, he said, illustrated that patients didn’t mind when doctors took their cells and turned them into commercial products. The judge believed Moore was unusual in his objections. But in fact, he was simply the first to realize there was something potentially objectionable going on.

Moore appealed, and in 1988 the California Court of Appeals

ruled in his favor, pointing to the Protection of Human Subjects in Medical Experimentation Act, a 1978 California statute requiring that research on humans respect the “right of individuals to determine what is done to their own bodies.” The judges wrote, “A patient must have the ultimate power to control what becomes of his or her tissues. To hold otherwise would open the door to a massive invasion of human privacy and dignity in the nam...

Nearly seven years after Moore originally filed suit, the Supreme Court of California ruled against him in what became the definitive statement on this issue: When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes. When you leave tissues in a doctor’s office or a lab, you abandon them as waste, and anyone can take your garbage and sell it. Since Moore had abandoned his cells, they were no longer a product of his body, the ruling said. They had been “transformed” into an invention and were now the product of Golde’s “human ingenuity” and “inventive effort.”

Moore wasn’t awarded any of the profits, but the judge did agree with him on two counts: lack of informed consent, because Golde hadn’t disclosed his financial interests, and breach of fiduciary duty, meaning Golde had taken advantage of his position as doctor and violated patient trust. The court said researchers should disclose financial interests in patient tissues, though no

law requi...

Zakariyya blamed his father for Henrietta’s death, hated him for burying her in an unmarked grave, and never forgave him for leaving the children with Ethel. Day eventually stopped inviting him in, even though it sometimes meant walking past Zakariyya sleeping on the sidewalk.

Regardless, it was not standard practice for a doctor to hand a patient’s medical records over to a reporter. Patient confidentiality has been an ethical tenet for centuries: the Hippocratic Oath, which most doctors take when graduating from medical school, says that being a physician requires the promise of confidentiality because without it, patients would never disclose the deeply personal information needed to make medical diagnoses. But like the Nuremberg Code and the American Medical Association Code of Ethics, which clearly said that doctors should keep patient information confidential, the Hippocratic Oath wasn’t law. Today, publishing medical records without permission could violate federal law. But in the early eighties, when someone gave Henrietta’s medical records to Gold, there was no such law. Many states—more than thirty, in fact—had passed laws protecting the confidentiality of a patient’s medical records, but Maryland was not one of them.

More than thirty years after Henrietta’s death, research on HeLa cells finally helped uncover how her cancer started and why her cells never died. In 1984 a German virologist named Harald zur Hausen discovered a new strain of a sexually transmitted virus called Human Papilloma Virus 18 (HPV-18). He believed it and HPV-16, which he’d discovered a year earlier, caused cervical cancer. HeLa cells in his lab tested positive for the HPV-18 strain, but zur Hausen requested a sample of Henrietta’s original biopsy from Hopkins, so he could be sure her cells hadn’t been contaminated with the virus in culture. The sample didn’t just test positive; it showed that Henrietta had been infected with multiple copies of HPV-18, which turned out to be one of the most virulent strains of the virus. There are more than one hundred strains of HPV in existence, thirteen of which cause cervical, anal, oral, and penile cancer—today, around 90 percent of all sexually active adults become infected with at least one strain during their lifetimes.

They learned that HPV inserts its DNA into the DNA of the host cell, where it produces proteins that lead to cancer. They also found that when they blocked the HPV DNA, cervical cancer cells stopped being cancerous. These discoveries would help lead to an HPV vaccine, and eventually earn zur Hausen a Nobel Prize.