In 1976, John Moore, a surveyor, contracts a form of leukemia: his spleen is filled with malignant blood cells. He comes under the treatment of David Golde, a researcher at UCLA, who removes the spleen. Moore goes back to his regular life, but visits Golde every few months for follow-ups, during which he gives the doctor tissue samples. When he tells Golde that he wants to do follow-ups closer to his home, however, Golde tries to bribe him to keep coming.
We now enter a new phase of the narrative: patients, no longer intimidated by the medical establishment, now attempt to take back the rights and the profits that doctors had previously taken from them. The story of Golde and Moore is only the first of many such stories in which medicine and law come into conflict.
Seven years later, a nurse hands Moore a form: he must choose whether or not to give UCLA rights over a cell line developed from his tissue. Moore asks whether his tissue has any “commercial value.” Golde denies this, but Moore still refuses to sign the agreement. Almost immediately after, Golde begins hounding him to sign the consent form. Eventually Moore sends the form to a lawyer and discovers that Golde has been developing and selling a cell line called “Mo.”
The Moore story is significant not only for its legal precedent, but also for the similarities and differences it has to Henrietta’s story. Like Henrietta, Moore comes in with a medical problem, and is utterly unaware that his tissues might be valuable. Unlike Henrietta, however, Moore is asked to sign a form (and eventually refuses to do so), and also has the resources and the knowledge to hire a lawyer.
Moore describes the experience as “dehumanizing.” He finds that “Golde has filed for a patent on Moore’s cells, and several extremely valuable proteins those cells produced.” In fact, the market value of Mo, at this point, is “estimated to be $3 billion.”
As modern science moved closer to being able to manipulate and create organisms like bacteria, the question of ownership and profit became more important, but also more complicated. These concerns, taken for granted in science today, weren’t even present in the minds of researchers like Gey.
The idea of biological materials being patentable only came into being in 1980, when the Supreme Court heard the case of Ananda Mohan Chakrabarty. A GE scientist, he created a bacterium that could metabolize oil and clean up oil spills, and filed a patent for it. His application was denied because “no living organism could be considered an invention.” Chakrabarty and his lawyers argued that the bacterium wasn’t naturally occurring, and the Court agreed.
Although patenting ensures that inventors get the profits from their inventions, it also allows researchers such as Golde to claim ownership of tissues that in fact come from another human—an ethically tricky dilemma which has become increasingly common in the modern scientific age.
Suddenly it was possible to patent biological discoveries, “including genetically modified animals and cell lines,” without getting permission. Moore’s cells produce extremely valuable proteins that can actually treat infections and cancer. They also carry a virus called HTLV, a cousin of HIV, which researchers hope to use to create an HIV vaccine.
It’s certainly easy to relate to Moore’s frustration, but Golde isn’t just using his cells for his own gain—he’s also potentially saving thousands or millions of other lives with them, and this research could be hindered by Moore’s resistance.
Rebecca gives background on a man named Ted Slavin—a hemophiliac in the 1950s who is repeatedly exposed to hepatitis B from his blood transfusions. As a result, he has a high amount of antibodies for the virus in his bloodstream, just as researchers worldwide are attempting to develop a hepatitis B vaccine. Slavin begins selling his blood, but also gets in touch with virologist Baruch Blumberg. Slavin offers Blumberg “free use of his blood and tissues,” and eventually Blumberg creates the first hepatitis B vaccine, while Slavin founds a company called Essential Biologicals, which provides labs with valuable blood and tissue.
Skloot doesn’t take sides on the issue, but here offers an example of a more harmonious “middle way”—an instance in which a researcher and a patient work together for both discovery and profit. As we can see, this mutually beneficial partnership leads to innovation without the legal struggle—an ideal but unfortunately rare situation.
Since Golde has already patented the Mo cell line, Moore cannot sell his own cells. In 1984, he sues Golde and UCLA. He also claims his tissues as property, and sues Golde for theft. Scientists all over the world begin to panic, worried that researchers will be vulnerable to lawsuits from everyone from whom they ever took a tissue sample.
Despite the evidence of the beneficial partnership of Slavin and Blumberg, researchers still become convinced that giving patients control over their own tissues will ruin or hinder scientific research. As usual, Skloot gives both sides of the argument due time.
As this goes on, various researchers, universities, and biotech companies are also suing each other over who owns various cell lines. Only two suits mention the originators of these cells. Meanwhile, the judge in Moore’s case throws out his suit, saying that the fact that no one has sued for ownership of the HeLa line shows that patients don’t mind when doctors employ their cells for commercial uses. Moore appeals, and in 1988 the California Court of Appeals rules in his favor. Next Golde appeals and wins. Seven years after the original suit, the California Supreme Court rules against Moore, stating that once tissues are removed from your body, you no longer own them.
As legal and medical disputes come together, the question of HeLa comes into play—incorrectly—as a judge assumes that the Lacks family does not mind the existence of HeLa. In fact, the Lacks family was never even consulted, and simply does not have the means to sue Hopkins (or the hundreds of other institutions, companies, and labs that use HeLa). Even as a debate over patients’ rights rages, the Lackses are still ignored.
The Supreme Court judge does agree with Moore on two counts, however: first, Golde did not obtain his consent, and second, Golde didn’t disclose the profit he was making, thus violating the doctor/patient relationship. The court states, “researchers should disclose financial interests in patient tissues,” and criticizes the lack of effort to protect patients in tissue research. It adds that giving patients rights might severely damage the field of tissue research. Scientists react with triumph.
This legal case is a setback for patients’ rights, even though the judge does criticize researchers’ practices and gives some (non-legally-binding) advice for the future. In response, scientists act as if they have won a victory over the very patients whom they are sworn to help and protect—it’s a complicated situation all around.
The Lackses have no idea about this national debate, although they are still attempting to publicize what they believe to be Johns Hopkins’crimes.
Left out in the cold, the Lackses continue to speak about the injustice they’ve experienced, but no one will listen.