"Who Told You Could Sell My Spleen" (1976-1988)
- John Moore, a surveyor on the Alaska Pipeline, learned that he has a rare form of leukemia and went to David Golde at UCLA for treatment.
- After Moore signed a consent form for the cremation disposal of his tissues, Golde removed Moore's cancerous spleen.
- Moore did well after the surgery, and returned from Seattle to have checkups for the next seven years.
- But Moore got tired of traveling so far just to give samples of his fluids and tissues, so he told Golde that he wanted a local doctor to look after him from that point on.
- Golde balked and told Moore that he'd pay all his expenses and put him up in a luxury hotel if he'd just come back to UCLA for follow up exams. Weird, right?
- Moore got super suspicious when he was given a form to sign that would waive any right that he or his heirs would have to a cell line developed from his tissues.
- He had no idea what this meant, and initially signed the form. But the second time it was given to him, Moore had to think about it. He decided not to sign.
- Golde didn't like this one bit and Moore didn't want a confrontation with him, so he avoided his doctor's office when they called about the form.
- But they got in his face about it, so Moore sent the form to his lawyer for further investigation.
- Guess what? Golde had developed a cell line from Moore's tissues (called Mo) without his knowledge or consent.
- Moore felt dehumanized. Golde stood to make a lot of money on the patented line, which was why, after seven years, he was so desperate to have Moore sign the release form.
- Moore would need to fight Golde in court if he wanted to retain control of his own biological materials.
- Skloot tells us that the patenting of biological materials was actually quite new at this time. In 1980, a scientist who created a bacterium to help eat materials from an oil spill won a Supreme Court case to obtain a patent for his engineered bacteria.
- And the reason for this scientist's victory? The bacteria were not naturally occurring; they'd been altered by "human ingenuity" to do a specific kind of work.
- It turns out that patenting cell lines didn't require the knowledge or permission of the person from which the cells had been harvested.
- So basically, Moore had shaky grounds for his legal proceedings. If he'd caught Golde before he'd put the work in on the cell line, he could have dealt directly with the microbiologic companies. But he didn't.
- There was a guy named Ted Slavin who'd been able to do this with his antibodies, and it ended well for him.
- But the reason for Slavin's successful marketing of his own biological materials was that his doctor dealt ethically with him and explained the value of his antibodies.
- Slavin eventually started a company called Essential Biologicals, the beginning of an industry where people with valuable biological materials could market them on their own.
- But Moore was in a tough situation: he couldn't lay claim to Golde's work on the cell line. But he could sue for property rights over his tissues, which is what he did.
- Of course, the scientific community was horrified, claiming that Moore would bring scientific progress to a halt if he won rights over his tissues.
- Skloot points out that plenty of members of the scientific community were waging legal battles with each other over ownership of cell lines.
- There was a lot of debate over who had a legitimate stake in the creation of cell lines.
- Citing the HeLa cell situation, the judge in Moore's case threw the suit out of court. No patient had ever minded before that their tissues were taken without consent, so why fuss now?
- Moore appealed and got a ruling in his favor. But then Golde appealed and won. Finally, the Supreme Court of California ruled against Moore.
- They said that once tissues are removed from your body, consent or no, they're out of your control. And once changed by "human ingenuity," the original owner was out of luck.
- But Moore had one small victory. The court said that Golde should have obtained informed consent and that he violated patient trust by not disclosing his intentions.
- Scientists were super happy with this ruling, because the court wasn't willing to complicate scientific research by giving patients any rights.
- On the other side of the country, the Lacks family had no idea that all of this was going on.