WHO TOLD YOU YOU COULD SELL MY SPLEEN?

Scientists, lawyers, ethicists, and policymakers debated the issues: some called for legislation that would make it illegal for doctors to take patients' cells or commercialize them without consent and the disclosure of potential profits; others argued that doing so would create a logistical nightmare that would put an end to medical progress.

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, ill.u.s.trated 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 ma.s.sive invasion of human privacy and dignity in the name of medical progress."

But Golde appealed and won. And with each new decision in the suit, headlines flip-flopped:

COURT RULES CELLS ARE THE PATIENT'S PROPERTY ...

COURT BACKS DOCTORS' RIGHT TO USE PATIENT TISSUES

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 required it. It also pointed out the lack of regulation and patient protections in tissue research, and called on legislators to remedy the situation. But it said that ruling in Moore's favor might "destroy the economic incentive to conduct important medical research," and that giving patients property rights in their tissues might "hinder research by restricting access to the necessary raw materials," creating a field where "with every cell sample a researcher purchases a ticket in a litigation lottery."

Scientists were triumphant, even smug. The dean of the Stanford University School of Medicine told a reporter that as long as researchers disclosed their financial interests, patients shouldn't object to the use of their tissues. "If you did," he said, "I guess you could sit there with your ruptured appendix and negotiate."

Despite the widespread media coverage of the Moore suit, the Lacks family had no idea any of this was happening. As the debate over ownership of human tissues played out around the country, the Lacks brothers continued to tell anyone who'd listen that Johns Hopkins had stolen their mother's cells and owed them millions of dollars. And Deborah started handing out newsletters about her mother and the cells, saying, "I just want y'all read what's on this paper! And tell everybody! Bring it around. We want everybody in the world to know about my mother."

CHAPTER 26

Breach of Privacy

Despite her fears, Deborah didn't die on her thirtieth birthday. She just kept raising her kids, working various jobs as a barber, notary public, chemical mixer at a cement plant, grocery store clerk, limousine driver.

In 1980, four years after divorcing Cheetah, Deborah took her car to a mechanic named James Pullum, who also worked at a local steel mill. They married in 1981, when Deborah was thirty-one and Pullum was forty-six, soon after he got called by the Lord to moonlight as a preacher. Pullum had some run-ins with the law before he was saved, but with him, Deborah felt safe. He rode around Baltimore on his Harley with a knife in his pocket and always had a pistol close. When he asked Deborah why he'd never met her mother, she laid the Rolling Stone article on the bed for him to read, and he said she should get a lawyer. She told him to mind his own business. Eventually they opened up a little storefront church, and for a while Deborah stopped worrying so much about her mother's cells.

Zakariyya was out of prison after serving only seven of his fifteen-year sentence. He'd gotten himself certified to fix air conditioners and work on trucks, but he still wrestled with anger and drinking, and on the rare occasions when he found jobs, he lost them quickly. He couldn't afford rent, so he slept most nights on a bench on Federal Hill in downtown Baltimore, or on the steps of a church across the street from his father's house. Day would sometimes look out his bedroom window and see his son lying on the concrete, but when he invited him in, Zakariyya snarled and said the ground was better. 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.

At some point, Zakariyya noticed an ad seeking volunteers for medical studies at Hopkins, and he realized he could become a research subject in exchange for a little money, a few meals, sometimes even a bed to sleep on. When he needed to buy eyegla.s.ses, he let researchers infect him with malaria to study a new drug. He volunteered for research on alcoholism to pay for a new job-training program, then signed up for an AIDS study that would have let him sleep in a bed for nearly a week. He quit when the researchers started talking about injections, because he thought they'd infect him with AIDS.

None of the doctors knew they were doing research on Henrietta Lacks's son, because he'd changed his name. Zakariyya and Deborah always figured that if Hopkins had found out he was a Lacks, they wouldn't have let him leave.

The biggest payday any of the Lacks children ever saw came when Day and other workers got a settlement from a cla.s.s-action lawsuit against a boiler manufacturer over the damage done to their lungs from asbestos exposure at Bethlehem Steel. Day got a check for $12,000, and gave $2,000 to each of his children. Deborah used hers to buy a small piece of land in Clover, so she could someday move down to the country and live near her mother's grave.

Sonny's rough period was only getting worse: most of his income now came from a food-stamp ring he ran out of Lawrence's convenience store, and soon he found himself in jail for narcotics trafficking. And it looked like Deborah's son Alfred was taking the same path as his uncles: by the age of eighteen, he'd already been arrested several times for minor offenses, like breaking and entering. After bailing him out a few times, Deborah started leaving him in jail to teach him a lesson, saying, "You just stay there till your bail come down to where you can afford it." Later, when he joined the Marines and quickly went AWOL, Deborah tracked him down and made him turn himself in to the military police. She hoped some time in minimum security would convince him he never wanted to end up in a penitentiary. But things just got worse, with Alfred stealing and coming home on drugs, and eventually Deborah realized she couldn't do a thing about it. She told him, "The devil got you, boy-that stuff you on make you crazy. I don't know you, and I don't want you around here no more."

In the midst of all this, someone told Deborah that as Henrietta's next of kin, she could request a copy of her mother's records from Hopkins to learn about her death. But Deborah didn't do it, because she was afraid of what she might find and how it might affect her. Then, in 1985, a university press published a book by Michael Gold, a reporter from Science 85 magazine, about Walter Nelson-Rees's campaign to stop HeLa contamination. It was called A Conspiracy of Cells: One Woman's Immortal Legacy and the Medical Scandal It Caused.

No one in the Lacks family remembers how they learned about Gold's book, but when Deborah got a copy, she flipped through it as fast as she could, looking for her mother. She found the photo of Henrietta, hands on hips, at the front of the book, and her name at the end of the first chapter. Then she read the pa.s.sage out loud to herself, shaking with excitement:

They were all the cells of an American who in her entire life had probably not been more than a few miles from her home in Baltimore, Maryland. ... Her name was Henrietta Lacks.

In the ten-page chapter that followed, Gold quoted extensively from her medical records: the blood spotting her underwear, the syphilis, her rapid decline. No one in Henrietta's family had ever seen those medical records, let alone given anyone at Hopkins permission to release them to a journalist for publication in a book the whole world could read. Then, without warning, Deborah turned the pages of Gold's book and stumbled on the details of her mother's demise: excruciating pain, fever, and vomiting; poisons building in her blood; a doctor writing, "Discontinue all medication and treatments except a.n.a.lgesics;" and the wreckage of Henrietta's body during the autopsy:

The dead woman's arms had been pulled up and back so that the pathologist could get at her chest ... the body had been split down the middle and opened wide ... greyish white tumor globules ... filled the corpse. It looked as if the inside of the body was studded with pearls. Strings of them ran over the surfaces of the liver, diaphragm, intestine, appendix, r.e.c.t.u.m, and heart. Thick cl.u.s.ters were heaped on top of the ovaries and fallopian tubes. The bladder area was the worst, covered by a solid ma.s.s of cancerous tissue.

After reading that pa.s.sage, Deborah fell apart. She spent days and nights crying, imagining the pain Henrietta must have been in. She couldn't close her eyes without seeing her mother's body split in half, arms askew, and filled with tumors. She stopped sleeping. And soon she was as angry at Hopkins as her brothers. She stayed up nights wondering, Who gave my mother medical records to a reporter? Lawrence and Zakariyya thought Michael Gold must have been related to George Gey or some other doctor at Hopkins-how else could he have gotten their mother's records?

When I called Michael Gold years later, he didn't remember who'd given him the records. He said he'd had "good long conversations" with Victor McKusick and Howard Jones, and was pretty sure Jones had given him the photo of Henrietta. But he wasn't sure about the records. "They were in somebody's desk drawer," he told me. "I don't remember if it was Victor McKusick or Howard Jones." When I talked to Jones, he had no memory of Gold or his book, and denied that either he or McKusick ever gave Henrietta's medical records to anyone.

Henrietta and David Lacks, circa 1945.

Left: Elsie Lacks, Henrietta's older daughter, about five years before she was committed to Crownsville State Hospital, with a diagnosis of "idiocy." Right: Deborah Lacks at about age four.

The home-house where Henrietta was raised, a four-room log cabin in Clover, Virginia, that once served as slave quarters, 1999.

Henrietta's mother, Eliza Pleasant, died when Henrietta was four. Henrietta is buried somewhere in the clearing beside her mother's tombstone, in an unmarked grave.

South Boston tobacco auction, circa 1920s. Henrietta and her family sold their crops at this auction house.

Sparrows Point workers cleaning a furnace by removing "slag," a toxic by-product of molten metal, sometime in the 1940s. COURTESY OF THE DUNDALK-PATAPSKO NECK HISTORICAL SOCIETY

Howard W. Jones, the gynecologist who diagnosed Henrietta's tumor, sometime in the 1950s.

George Gey, who directed the laboratory in which HeLa cells were first grown, circa 1951.

ALAN MASON CHESNEY MEDICAL ARCHIVE

Henrietta Lacks's death certificate.

Sadie St.u.r.divant, Henrietta's cousin and close friend, in the early 1940s.

In 1949, labs had to make their own culture medium, a laborious process. In this picture, the man is stirring broth in a vat while the women filter the broth into smaller bottles. After HeLa, it became possible to order ready-made media by mail. HULTON-DEUTSCH COLLECTION/CORBIS

Margaret Gey and Minnie, a lab technician, in the Gey lab at Hopkins, circa mid-1960s. COURTESY OF MARY KUBICEK

Mary Kubicek, the technician in the Gey lab who processed Henrietta's tumor sample and grew her cells in culture. COURTESY OF MARY KUBICEK

Four technicians at the Tuskegee Inst.i.tute's HeLa ma.s.s production center inspecting HeLa cells before shipping them. MARCH OF DIMES FOUNDATION

a. One HeLa cell dividing into two. COURTESY OF PAUL D. ANDREWS

b. These HeLa cells were stained with special dyes that highlight specific parts of each cell. Here, the DNA in the nucleus is yellow, the actinfilaments are light blue, and the mitochondria-the cell's power generators-are pink. OMAR QUINTERO

c. These HeLa cells were stained with fluorescent dye and photographed under a confocal microscope. COURTESY OF TOM DEERINCK

Deborah at about thirteen, the age when she was fending off her cousin Galen.

Deborah with her children, LaTonya and Alfred, and her second husband, James Pullum, in the mid-1980s.