The Immortal Life of Henrietta Lacks (31 page)

In 2001, Deborah developed a severe case of hives after learning upsetting new information about her mother and sister.

Deborah and her cousin Gary Lacks standing in front of drying tobacco, 2001.

Left:
Deborah’s grandson Davon, 2000.
Center:
Deborah with her brother Sonny’s granddaughters, JaBrea (left) and Aiyana, 2007.
Right:
Henrietta’s son Sonny with his granddaughter JaBrea, who had just been baptized, 2001.

The Lacks family in 2009. Clockwise from top right: Henrietta’s middle son, Sonny (in baseball cap); Sonny’s oldest daughter, Jeri; Henrietta’s youngest son, Zakariyya; Henrietta’s oldest son, Lawrence; Lawrence’s son Ron; Deborah’s grandson Alfred; Lawrence’s granddaughter Courtnee; Sonny’s wife, Sheryl; Sonny’s son, David; Lawrence’s daughter Antonetta; Sonny’s son-in-law, Tom. Center: Lawrence’s wife, Bobbette (in red), with her and Lawrence’s granddaughter Erika (wearing glasses).

It wasn’t illegal for a journalist to publish medical information given to him by a source, but doing so without contacting the subject’s family to ask additional questions, verify information, and let them know such private information was being published could certainly have been considered questionable judgment. When I asked Gold whether he tried to speak to the Lacks family, he said, “I think I wrote some letters and made some calls, but the addresses and phone numbers never seemed to be current. And to be honest, the family wasn’t really my focus. … I just thought they might make some interesting color for the scientific story.”

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.

Several patients had successfully sued their doctors for privacy violations, including one whose medical records were released without her consent, and others whose doctors either published photographs or showed videos of them publicly, all without consent. But those patients had one thing going for them that Henrietta didn’t: They were alive. And the dead have no right to privacy—even if part of them is still alive.

27
The Secret of Immortality

M
ore 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. Throughout the eighties, using HeLa and other cells, scientists studied HPV infection and how it causes cancer. 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.

Research into HPV eventually uncovered how Henrietta’s cancer started: HPV inserted its DNA into the long arm of her eleventh chromosome and essentially turned off her p53 tumor suppressor gene. What scientists still haven’t figured out is why this produced such monstrously virulent cells both in and out of Henrietta’s body, especially since cervical cancer cells are some of the hardest of all cells to culture.

When I talked to Howard Jones fifty years after he found the tumor on Henrietta’s cervix, he was in his early nineties and had seen thousands of cervical cancer cases. But when I asked if he remembered Henrietta, he laughed. “I could never forget that tumor,” he said, “because it was unlike anything I’ve ever seen.”

I talked to many scientists about HeLa, and none could explain why Henrietta’s cells grew so powerfully when many others didn’t even survive. Today it’s possible for scientists to immortalize cells by exposing them to certain viruses or chemicals, but very few cells have become immortal on their own as Henrietta’s did.

Members of Henrietta’s family have their own theories about why her cells grew so powerfully: Henrietta’s sister Gladys never forgave her for moving to Baltimore and leaving their father behind for Gladys to care for as he aged. The way Gladys saw it, that cancer was the Lord’s way of punishing Henrietta for leaving home. Gladys’s son Gary believed all disease was the wrath of the Lord—punishment for Adam eating the apple from Eve. Cootie said it was the disease-causing spirits. And Henrietta’s cousin Sadie never knew what to think.

“Oh Lord,” she told me once. “When I heard about them cells I thought, Could it’a been somethin live got up in her, you know? It scared me, cause we used to go around together all the time. Hennie and I ain’t never been in that nasty water down there in Turners Station like the other peoples, we didn’t go to no beach or nothing like that, and we didn’t never go without no panties or anything, so I don’t know how something got up inside Hennie. But it did. Somethin came alive up in her. She died, and it just keep on living. Made me start thinkin things, you know, like maybe something come out of space, dropped down, and she walked over it.”

Sadie laughed when she said this because she knew it sounded crazy. “But that did went through my mind,” she said. “I ain’t lying. Everything just go through your mind, you know? How else you gonna explain them cells growin like they do?”

     
E
very decade has had its landmark moments in HeLa research, and the connection between HPV and cervical cancer was only one of several in the eighties. At the beginning of the AIDS epidemic, a group of researchers—including a molecular biologist named Richard Axel, who would go on to win a Nobel Prize—infected HeLa cells with HIV. Normally, HIV can infect only blood cells, but Axel had inserted a specific DNA sequence from a blood cell into HeLa cells, which made it possible for HIV to infect them as well. This allowed scientists to determine what was required for HIV to infect a cell—an important step toward understanding the virus, and potentially stopping it.

Axel’s research caught the attention of Jeremy Rifkin, an author and activist who was deeply involved in a growing public debate over whether scientists should alter DNA. Rifkin and many others believed that any manipulation of DNA, even in a controlled laboratory setting, was dangerous because it might lead to genetic mutations and make it possible to engineer “designer babies.” Since there were no laws limiting genetic engineering, Rifkin regularly sued to stop it using any existing laws that might apply.

In 1987 he filed a lawsuit in federal court to halt Axel’s research on the grounds that it violated the 1975 National Environmental Policy Act, because it had never been proven environmentally safe. It was widely known, Rifkin pointed out, that HeLa was “an extraordinarily virulent and infectious line of cells” that could contaminate other cultures. Once Axel infected HeLa cells with HIV, Rifkin said, they could infect other cells and expose lab researchers around the world to HIV, “thus increasing the virus’ host range and potentially leading to the further hazardous dissemination of the AIDS virus genome.”

Axel responded to the suit by explaining that cells couldn’t grow outside of tissue culture and that there was a world of difference between culture contamination and HIV infection.
Science
reported on the lawsuit, writing, “Even Rifkin admits that taken together these events sound more like the plot of a grade-B horror movie than the normal run of affairs in the country’s biomedical research laboratories.” Eventually the suit was dismissed, Axel went on using HeLa for HIV research, and Rifkin’s horror-film scenario didn’t come true.

But in the meantime two scientists had developed a theory about HeLa that sounded far more like science fiction than anything Rifkin had come up with: HeLa, they said, was no longer human.

Cells change while growing in culture, just as they change in a human body. They’re exposed to chemicals, sunlight, and different environments, all of which can cause DNA changes. Then they pass those changes on to each new generation of cells through cell division, a random process that produces even more changes. Like humans, they evolve.

All of this happened to Henrietta’s cells once they were placed in culture. And they passed those changes on to their daughter cells, creating new families of HeLa cells that differed from one another in the same way that second, third, and fourth cousins differ, though they share a common ancestor.

By the early nineties, the little sample of Henrietta’s cervix that Mary had put into culture in the Gey lab had given rise to many tons of other cells—all still known as HeLa, but all slightly different from one another, and from Henrietta. Because of this, Leigh Van Valen, an evolutionary biologist at the University of Chicago, wrote, “We here propose, in all seriousness, that [HeLa cells] have become a separate species.”