The Immortal Life Of Henrietta Lacks Part 23

But that changed when he and his brothers read Rogers's article and learned this:

Cell lines are swapped, traded, forwarded, begged and borrowed among research inst.i.tutions around the world. ... The inst.i.tutional 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 gla.s.s vial of HeLa cells.

With that paragraph, suddenly the Lacks brothers became very interested in the story of HeLa. They also became convinced that George Gey and Johns Hopkins had stolen their mother's cells and made millions selling them.

But in fact, Gey's history indicates that he wasn't particularly interested in science for profit: in the early 1940s he'd turned down a request to create and run the first commercial cell-culture lab. Patenting cell lines is standard today, but it was unheard of in the fifties; regardless, it seems unlikely that Gey would have patented HeLa. He didn't even patent the roller drum, which is still used today and could have made him a fortune.

In the end, Gey made a comfortable salary from Hopkins, but he wasn't wealthy. He and Margaret lived in a modest home that he bought from a friend for a one-dollar down payment, then spent years fixing up and paying off. Margaret ran the Gey lab for more than a decade without pay. Sometimes she couldn't make their house payments or buy groceries because George had drained their account yet again buying lab equipment they couldn't afford. Eventually she made him open a separate checking account for the lab, and kept him away from their personal money as much as she could. On their thirtieth wedding anniversary, George gave Margaret a check for one hundred dollars, along with a note scribbled on the back of an aluminum oxide wrapper: "Next 30 years not as rough. Love, George." Margaret never cashed the check, and things never got much better.

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. Microbiological a.s.sociates-which later became part of Invitrogen and BioWhittaker, two of the largest biotech companies in the world-got its start selling HeLa. Since Microbiological a.s.sociates 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 pa.s.sage after pa.s.sage 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:

going on with pain

... we should know what's going on with her cells from all of them that have her cells. You might want to ask why so long with this news, well its been out for years in and out of video's papers, books, magazines, radio, tv, all over the world. ... I was in shock. Ask, and no one answers me. I was brought up to be quiet, no talking, just listen. ... I have something to talk about now, Henrietta Lacks what went out of control, how my mother went through all that pain all by her self with those cold hearted doctor. Oh, how my father, said how they cooked her alive with radiation treatments. What went on in her mind in those short months. Not getting better and slipping away from her family. You see I am trying to relive that day in my mind. Youngest baby in the hospital with TB oldest daughter in another hospital, and three others at home, and husband got to, you hear me, got to work through it all to make sure he can feed his babies. And wife dying ... Her in that cold looking ward at John Hopkin Hospital, the side for Black's only, oh yes, I know. When that day came, and my mother died, she was Robbed of her cells and John Hopkins Hospital learned of those cells and kept it to themselfs, and gave them to who they wanted and even changed the name to HeLa cell and kept it from us for 20+ years. They say Donated. No No No Robbed Self.

My father have not signed any paper. ... I want them to show me proof. Where are they.

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:

As I held the flask, I concentrated on the picture I'd formed in my mind of the cells, visualizing a disturbance in the cell fields and the cells blowing up. ... While I worked, I could feel a virtual tug-of-war going on between my hands and the cells' powerful adhesive ability. ... Then I felt the field give way, as I had broken through ... the cells looked as though someone had put a tiny hand grenade into each one-the whole culture had just blown apart! The number of dead floating cells had increased twenty times!

To Deborah, this sounded like a violent a.s.sault 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 1996 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.

CHAPTER 25

"Who Told You You Could Sell My Spleen?"

In 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 s.e.m.e.n, 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:

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 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.

Nothing 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."

Chakrabarty's victory opened up the possibility of patenting other living things, including genetically modified animals and cell lines, which didn't occur naturally outside the body. 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 hepat.i.tis B virus again and again, though he didn't find out until decades later, when a blood test showed extremely high concentrations of hepat.i.tis B antibodies in his blood. When the results of that blood test came back, Slavin's doctor-unlike Moore's-told him his body was producing something extremely valuable.

Researchers around the world were working to develop a vaccine for hepat.i.tis 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 laboratories and pharmaceutical companies to ask if they wanted to buy his antibodies. They said yes in droves.

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 hepat.i.tis B. So he wrote a letter to n.o.bel Prize-winning virologist Baruch Blumberg, who'd discovered the hepat.i.tis 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, Blumberg eventually uncovered the link between hepat.i.tis B and liver cancer, and created the first hepat.i.tis B vaccine, saving millions of lives.

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 two million Americans who currently sell their blood plasma, many of them on a regular basis.

Moore, however, couldn't sell the Mo cells because that would have violated Golde's patent. So in 1984, Moore sued Golde and 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 claim to his own tissue and sue for profits and damages.

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 research purposes," and worried that patients would block the progress of science by holding out for excessive profits, even with cells that weren't worth millions like Moore's.

But plenty of science was already on hold while researchers, universities, and biotech companies sued one another over ownership of various cell lines. Only two of those cases mentioned the people those cells came from: the first, in 1976, involved ownership of an important human-fetal-cell line. Leonard Hayflick, the researcher who'd originally grown the cells, argued that there were numerous parties with legitimate property interests in any cultured cells, including the scientist who grew them, the financers of any related work, and the "donors" of the original samples. Without any one of those contributions, he said, the cultured cells wouldn't exist, and neither would any money resulting from their sale. That case set no precedent because it settled out of court, with rights to the cells being divided between the parties involved in the lawsuit, which didn't include the cell "donor." The same was true of another case soon after, in which a young scientist took a cell line he'd helped develop in the United States and fled with it to his native j.a.pan, claiming ownership because the original cells had come from his mother.

The public didn't realize there was big money in cell lines until news of the Moore case hit, and headlines nationwide said things like:

OWNERSHIP OF CELLS RAISES STICKY ISSUES ...

WHO SHOULD HAVE RIGHTS TO A PATIENT'S CELLS? ...