I've been telling everyone I know that they should read The Immortal Life of Henrietta Lacks. (If you haven't read my interview with the book's author, journalist Rebecca Skloot, please do.) This fascinating book details Skloot's search for the source of a laboratory cell line called "HeLa." The cells originally came from a poor, black tobacco farmer named Henrietta Lacks. Woven into the tale of the Lacks family and Skloot's search for their history, though, is the story of the HeLa cells and laboratory cell lines in general. And throughout those sections I was reminded that what is legal is not necessarily what is moral or what is fair. And this is an area that we as a society are still trying to figure out.
Henrietta Lacks (who I'll call Henrietta after this--since reading Skloot's book, I've felt like I'm on a first-name basis with her) was a patient at Johns Hopkins Hospital in Baltimore in 1951 being treated for cervical cancer when a doctor took a sample of her cancer cells. A lab in the hospital had been trying, unsuccessfully, to culture cells, to get them to grow independently in a dish. Henrietta's cells kept growing and multiplying, and they continue to do so today. They were the first "immortal" cell line and were instrumental in a host of scientific developments, from the polio vaccine to cloning. However, no one ever got Henrietta's or her family's permission to take her cells and experiment with them. It wasn't required at the time. And since then, people have made a lot of money off of HeLa cells and HeLa-related discoveries (though not George Gey, the man who first cultured HeLa cells). Henrietta's descendants, meanwhile, have remained poor and often unable to afford health insurance. It's not surprising that when some of Henrietta's descendants realized what had been done with their mother's tissues, they thought it unfair that the family had not benefited directly.
But there are worse stories in Skloot's book. In one case, in 1954 Chester Southam, a researcher testing theories on how cancer originates, began injecting unsuspecting cancer patients with HeLa cells. He then expanded his experiment to inmates at an Ohio prison and gynecologic surgery patients at two hospitals, eventually injecting more than 600 people in his research. (He finally was stopped when three young doctors at the Jewish Chronic Disease Hospital in Brooklyn refused to conduct research on patients without asking for their consent.) Though the set of research principles known as the Nuremburg Code existed at the time, they weren't law. And Southam was just one of many scientists at the time conducting research we now recognize as immoral--there was one who poisoned anesthetized patients with carbon dioxide.
By 1976 there were laws and rule in place to prevent egregious abuse by researchers. That was the year that a doctor named David Golde treated John Moore for hairy-cell leukemia. For years after the surgery, Golde would call Moore in for follow-up exams and to obtain samples of bone marrow or blood. Moore eventually discovered that those exams were not for his benefit alone--Golde was developing and patenting a cell line called Mo (today worth about $3 billion). Moore sued Golde and UCLA, claiming they had deceived him and used his body for research without his consent. Moore lost the case, Moore v. Regents of the University of California, and the Supreme Court of California ruled that once tissues have been removed from your body, your claim on them has vanished. Golde had done nothing illegal, but our sense of fair play says that something is wrong here.
Rules governing patient consent are much more stringent now, but lawmakers, scientists and bioethicists are still trying to figure out what is the right thing to do when it comes to our cells. Without tissues, researchers would not be able to work towards curing diseases and treating conditions. But Skloot reminds us that they need to consider patients' voices when making the laws and rules that govern such work. So as part of her book tour, Skloot will be talking directly to scientists and bioethicists so that Henrietta's story can become part of that conversation.
And what about Henrietta's family? Skloot has created the Henrietta Lacks Foundation, which will provide scholarships to Henrietta's descendants, "giving those who have benefited from HeLa cells — including scientists, universities, corporations, and the general public — a way to show thanks to Henrietta and her family, while helping her descendants receive the education that generations before them weren’t able to afford."