The Immortal Life Of Henrietta Lacks Part 20

Day clenched his three remaining teeth. "I didn't sign no papers," he said. "I just told them they could do a topsy Nothin else. Them doctors never said nuthin about keepin her alive in no tubes or growin no cells. All they told me was they wanted to do a topsy see if they could help my children. And I've always just knowed this much: they is the doctor, and you got to go by what they say. I don't know as much as they do. And them doctors said if I gave em my old lady, they could use her to study that cancer and maybe help my children, my grandchildren."

"Yeah!" Sonny yelled. "They said it would help his kids in case they come down with cancer. He had five kids, what was he going to do?"

"They knew them cells was already growin when I come down there after she died," Day said, shaking his head. "But they didn't tell me nuthin bout that. They just asked if they could cut her up see about that cancer."

"Well what do you expect from Hopkins?" Bobbette yelled from the kitchen, where she sat watching a soap opera. "I wouldn't even go there to get my toenails cut."

"Mmm hmm," Day yelled back, thumping his silver cane on the floor like an exclamation point.

"Back then they did things," Sonny said. "Especially to black folks. John Hopkins was known for experimentin on black folks. They'd s.n.a.t.c.h em off the street..."

"That's right!" Bobbette said, appearing in the kitchen door with her coffee. "Everybody knows that."

"They just s.n.a.t.c.h em off the street," Sonny said.

"s.n.a.t.c.hin people!" Bobbette yelled, her voice growing louder.

"Experimentin on them!" Sonny yelled.

"You'd be surprised how many people disappeared in East Baltimore when I was a girl," Bobbette said, shaking her head. "I'm telling you, I lived here in the fifties when they got Henrietta, and we weren't allowed to go anywhere near Hopkins. When it got dark and we were young, we had to be on the steps, or Hopkins might get us."

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.

Some of the stories were conjured by white plantation owners taking advantage of the long-held African belief that ghosts caused disease and death. 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.

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.

Because of this history, black residents near Hopkins have long believed the hospital was built in a poor black neighborhood for the benefit of scientists-to give them easy access to potential research subjects. In fact, it was built for the benefit of Baltimore's poor.

Johns Hopkins was born on a tobacco plantation in Maryland where his father later freed his slaves nearly sixty years before Emanc.i.p.ation. Hopkins made millions working as a banker and grocer, and selling his own brand of whiskey, but he never married and had no children. So in 1873, not long before his death, he donated $7 million to start a medical school and charity hospital. He wrote a letter to the twelve men he'd chosen to serve as its board of trustees, outlining his wishes. In it he explained that the purpose of Hopkins Hospital was to help those who otherwise couldn't get medical care:

The indigent sick of this city and its environs, without regard to s.e.x, age, or color, who require surgical or medical treatment, and who can be received into the hospital without peril to other inmates, and the poor of the city and State, of all races, who are stricken down by any casualty, shall be received into the hospital without charge.

He specified that the only patients to be charged were those who could easily afford it, and that any money they brought in should then be spent treating those without money. He also set aside an additional $2 million worth of property, and $20,000 in cash each year, specifically for helping black children:

It will be your duty hereafter to provide ... suitable buildings for the reception, maintenance and education of orphaned colored children. I direct you to provide accommodations for three or four hundred children of this cla.s.s; you are also authorized to receive into this asylum, at your discretion, as belonging to such cla.s.s, colored children who have lost one parent only, and in exceptional cases to receive colored children who are not orphans, but may be in such circ.u.mstances as to require the aid of charity.

Hopkins died not long after writing that letter. His board of trustees-many of them friends and family-created one of the top medical schools in the country, and a hospital whose public wards provided millions of dollars in free care to the poor, many of them black.

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 n.a.z.i 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 worst offense is that of Henrietta Lacks-a black woman whose body, they say, was exploited by white scientists.

Sitting in Lawrence's living room, Sonny and Bobbette yelled back and forth for nearly an hour about Hopkins s.n.a.t.c.hing black people. Eventually, Sonny leaned back in his chair and said, "John Hopkin didn't give us no information about anything. That was the bad part. Not the sad part, but the bad part, cause I don't know if they didn't give us information because they was making money out of it, or if they was just wanting to keep us in the dark about it. I think they made money out of it, cause they were selling her cells all over the world and shipping them for dollars."

"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?"

Day had prostate cancer and asbestos-filled lungs. Sonny had a bad heart, and Deborah had arthritis, osteoporosis, nerve deafness, anxiety, and depression. With all that plus the whole family's high blood pressure and diabetes, the Lackses figured they pretty much supported the pharmaceutical industry, plus several doctors. But their insurance came and went. Some were covered through Medicare, others on and off by spouses, but they all went stretches with no coverage or money for treatment.

As the Lacks men talked about Hopkins and insurance, Bobbette snorted in disgust and walked to her recliner in the living room. "My pressure's goin up and I'm not gonna die over this, you know?" The whole thing just wasn't worth getting riled up over, she said. But she couldn't help herself. "Everybody knew black people were disappearing cause Hopkins was experimenting on them!" she yelled. "I believe a lot of it was true."

"Probably so," Sonny said. "A lot might a been myth too. You never know. But one thing we do know, them cells about my mother ain't no myth."

Day thumped his cane again.

"You know what is a myth?" Bobbette snapped from the recliner. "Everybody always saying Henrietta Lacks donated those cells. She didn't donate nothing. They took them and didn't ask." She inhaled a deep breath to calm herself. "What really would upset Henrietta is the fact that Dr. Gey never told the family anything-we didn't know nothing about those cells and he didn't care. That just rubbed us the wrong way. I just kept asking everybody, 'Why didn't they say anything to the family?' They knew how to contact us! If Dr. Gey wasn't dead, I think I would have killed him myself."

CHAPTER 22

"The Fame She So Richly Deserves"

One afternoon in the late spring of 1970, George Gey stood in his favorite waders on the bank of the Potomac River, where he and several other Hopkins researchers had been fishing together every Wednesday for years. Suddenly Gey was so exhausted, he could hardly hold his fishing rod. His buddies dragged him up the embankment to the white Jeep he'd bought using money from a cancer research award.

Soon after that fishing trip, at the age of seventy-one, Gey learned he had the disease he'd spent his entire life trying to fight. And he had one of its most deadly forms: pancreatic cancer. If doctors didn't operate, Gey knew he would die within months. If they did, it might buy him a little time. Or it might not.

On August 8, 1970, around 6:00 a.m., Margaret called each member of the Gey lab's staff, including a postdoctoral student who'd just flown in on a red-eye from Europe.

"Come down to the lab as fast as you can," she told them. "There's going to be an emergency procedure this morning." She didn't tell them what that procedure would be.

Before going into the operating room, George told his surgeons that he wanted them to take samples of his tumor, just as Dr. Wharton had done with Henrietta's tumor decades earlier. Gey gave his lab staff careful instructions for growing GeGe, a line of cancer cells taken from his pancreas. He hoped that his cells, like Henrietta's, would become immortal.

"Work all day and night if you have to," he told his postdocs and a.s.sistants. "Make this happen."

Soon, with Gey anesthetized on the operating table, surgeons opened him up and found that the cancer was inoperable-growths covered his stomach, spleen, liver, and intestines. They worried that cutting into the cancer might kill him. Despite Gey's wishes, they sewed him up without taking any samples. When he awoke from anesthesia and found out there would be no GeGe line, he was furious. If this cancer was going to kill him, he wanted it to help advance science in the process.

As soon as he'd recovered enough from his surgery to travel, Gey began contacting cancer researchers around the country, asking who was doing research on pancreatic cancer and needed a patient to experiment on. He was flooded with replies-some from scientists he didn't know, others from friends and colleagues.

In the three months between his surgery and his death, Gey went to the Mayo Clinic in Minnesota for a week of treatments with an experimental j.a.panese drug that made him violently ill. His son, George Jr., who had just finished medical school, sat with Gey through the whole thing and made sure he had a freshly pressed suit each day. After leaving the Mayo Clinic, Gey spent several days in New York City at Sloan-Kettering for another study, and he underwent chemotherapy at Hopkins using a drug not yet approved for use in humans.

Gey was six and a half feet tall and about 215 pounds when he was diagnosed, but he withered quickly. He often doubled over from abdominal pain, he vomited constantly, and the treatments soon left him confined to a wheelchair. But he continued showing up at the lab and writing letters to his colleagues. At some point not long before his death, he told his former a.s.sistant Mary Kubicek that it was fine to release Henrietta's name if anyone asked, since it had been so many years. But Mary never told a soul.

George Gey died on November 8, 1970.

A few months after Gey's death, Howard Jones and several Hopkins colleagues-including Victor McKusick, a leading geneticist-decided to write an article about the history of the HeLa cell line as a tribute to Gey's career. Before writing the article, Jones pulled Henrietta's medical records to remind himself of the details of her case. When he saw the photographs of her biopsy, he immediately realized her tumor had been misdiagnosed. To be sure, he dug out the original biopsy sample, which had been stored on a shelf since 1951.

In December 1971, when Jones and his colleagues published their tribute to Gey in the journal Obstetrics and Gynecology, they reported that the original pathologist had "misinterpreted" and "mislabeled" Henrietta's cancer. Her tumor was invasive, but not an epidermoid carcinoma as originally diagnosed. Rather, the article said, it was "a very aggressive adenocarcinoma of the cervix," meaning it originated from glandular tissue in her cervix instead of epithelial tissue.

A misdiagnosis of this type was not uncommon at the time. In 1951, the same year Jones biopsied Henrietta's tumor, researchers from Columbia University reported that the two types of cancer were easily and often confused.

According to Howard Jones and other gynecologic oncologists I talked with, the correct diagnosis wouldn't have changed the way Henrietta's cancer was treated. By 1951, at least twelve studies had found that cervical adenocarcinomas and epidermoid carcinomas responded the same to radiation, which was the treatment of choice for both types.