The Immortal Life of Henrietta Lacks (27 page)

Various spokespeople for Johns Hopkins, including at least one past university president, have issued statements to me and other journalists over the years saying that Hopkins never made a cent off HeLa cells, that George Gey gave them all away for free.

There’s no record of Hopkins and Gey accepting money for HeLa cells, but many for-profit cell banks and biotech companies have. Micro biological Associates—which later became part of Invitrogen and BioWhittaker, two of the largest biotech companies in the world—got its start selling HeLa. Since Microbiological Associates was privately owned and sold many other biological products, there’s no way to know how much of its revenue came specifically from HeLa. The same is true for many other companies. What we do know is that today, Invitrogen sells HeLa products that cost anywhere from $100 to nearly $10,000 per vial. A search of the U.S. Patent and Trademark Office database turns up more than seventeen thousand patents involving HeLa cells. And there’s no way to quantify the professional gain many scientists have achieved with the help of HeLa.

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.

Lawrence and Sonny knew none of this. All they knew was that Gey had grown their mother’s cells at Hopkins, someone somewhere
was making money off of them, and that someone wasn’t related to Henrietta Lacks. So, in an attempt to get Hopkins to give them what they saw as their cut of the HeLa profits, they made handouts about Henrietta Lacks’s family being owed their due, and gave them to customers at Lawrence’s store.

Deborah wanted nothing to do with fighting Hopkins—she was too busy raising her children and trying to teach herself about her mother’s cells. She got herself some basic science textbooks, a good dictionary, and a journal she’d use to copy passage after passage from biology textbooks: “Cell is a minute portion of living substance,” she wrote. “They create and renew all parts of the body.” But mostly she wrote diary entries about what was happening:

The more Deborah struggled to understand her mother’s cells, the more HeLa research terrified her. When she saw a
Newsweek
article called PEOPLE-PLANTS that said scientists had crossed Henrietta Lacks’s cells with tobacco cells, Deborah thought they’d created a human-plant monster that was half her mother, half tobacco. When she found out scientists had been using HeLa cells to study viruses like AIDS and Ebola, Deborah imagined her mother eternally suffering the symptoms of each disease: bone-crushing pain, bleeding eyes, suffocation. And she was horrified by reports of a “psychic healer” who, while conducting research into whether spiritual healing could cure cancer, attempted to kill HeLa cells by a laying on of hands. He wrote:

To Deborah, this sounded like a violent assault on her mother. But what bothered her most was the fact that so many scientists and journalists around the world continued to call her mother Helen Lane.
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 the legal right to marry a white person. It was also the story of cells from an uncredited black woman becoming one of the most important tools in medicine. This was big news.

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, “one of the pivotal figures in the crusade against cancer.”

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 to create a map of Henrietta’s DNA that scientists could use to help identify HeLa cells in culture.

Today, no scientist would dream of publishing a person’s name with any of their genetic information, because we know how much can be deduced from DNA, including the risks of developing certain
diseases. Publishing personal medical information like this could violate the 2006 Health Insurance Portability and Accountability Act (HIPAA) and result in fines up to $250,000 and up to ten years in jail. It could also violate the 2008 Genetic Information Nondiscrimination Act, created to protect people from losing their health insurance or employment due to genetic discrimination. But there was no such federal oversight at the time.

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
n 1976—the same year Mike Rogers published his article in
Rolling Stone
and the Lacks family found out people were buying and selling Henrietta’s cells—John Moore was working twelve-hour days, seven days a week, as a surveyor on the Alaska Pipeline. He thought the job was killing him. His gums bled, his belly swelled, bruises covered his body. It turned out that at the age of thirty-one, Moore had hairy-cell leukemia, a rare and deadly cancer that filled his spleen with malignant blood cells until it bulged like an overfilled inner tube.

Moore’s local doctor referred him to David Golde, a prominent cancer researcher at UCLA, who said that removing his spleen was the only way to go. Moore signed a consent form saying the hospital could “dispose of any severed tissue or member by cremation,” and Golde removed his spleen. A normal spleen weighs less than a pound; Moore’s weighed twenty-two.

After the surgery, Moore moved to Seattle, became an oyster salesman, and went on with his life. But every few months between 1976 and 1983, he flew to Los Angeles for follow-up exams with
Golde. At first Moore didn’t think much of the trips, but after years of flying from Seattle to L.A. so Golde could take bone marrow, blood, and semen, he started thinking,
Can’t a doctor in Seattle do this?
When Moore told Golde he wanted to start doing his follow-ups closer to home, Golde offered to pay for the plane tickets and put him up in style at the Beverly Wilshire. Moore thought that was odd, but he didn’t get suspicious until one day in 1983—seven years after his surgery—when a nurse handed him a new consent form that said:

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 Moore, Golde said no, but Moore circled “do not,” just in case.

After his appointment, Moore went to his parents’ house nearby. When he got there, the phone was ringing. It was Golde, who’d already called twice since Moore left the hospital. He said Moore must have accidentally circled the wrong option on the consent form, and asked him to come back and fix it.

“I didn’t feel comfortable confronting him,” Moore told a journalist years later, “so I said, ‘Gee, Doctor, I don’t know how I could have made that mistake.’ But I said I couldn’t come back, I had to fly to Seattle.”

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.

     
N
othing biological was considered patentable until a few years before Moore’s lawsuit, in 1980, when the Supreme Court ruled on the case of Ananda Mohan Chakrabarty, a scientist working at General Electric who’d created a bacterium genetically engineered to consume oil and help clean up oil spills. He filed for a patent, which was denied on the grounds that no living organism could be considered an invention. Chakrabarty’s lawyers argued that since normal bacteria don’t consume oil, Chakrabarty’s bacteria weren’t naturally occurring—they only existed because he’d altered them using “human ingenuity.”