Like many doctors of his era, TeLinde often used patients from the public wards for research, usually without their knowledge. Many scientists believed that since patients were treated for free in the public wards, it was fair to use them as research subjects as a form of payment. (30)
Sometimes, the desire to discover a new treatment overwhelms a doctor's awareness that he or she is treating a person. You know, a person? With rights and feelings? We can also see here the social prejudices about the poor. We're not sure this is what Johns Hopkins had in mind when he founded a charity hospital, but it was certainly the situation when Henrietta got to the hospital for treatment in 1951.
But first—though no one had told Henrietta that TeLinde was collecting sample or asked she wanted to be a donor—Wharton picked up a sharp knife and shaved two dine-sized pieces of tissue from Henrietta's cervix: one from her tumor, and one from the healthy cervical tissue nearby. Then he placed the samples in a glass dish. (33)
This simple act both set off decades of grief for the Lacks family and also ushered in an era of scientific discovery. Wharton probably wasn't thinking of either possibility when he took those tissue samples.
Toward the end of her treatments, Henrietta asked her doctor when she'd be better so she could have another child. Until that moment, Henrietta didn't know that the treatments had left her infertile. (47)
Although Hopkins had a policy of informing patients of radium treatment that they would lose their ability to have children, Henrietta appears to have fallen through the gaps. It doesn't matter that Henrietta would have been too ill to have a child had she refused the treatments. The burden of explanation belonged to the hospital; the burden of choice should have been Henrietta's.
They recruited hundreds of African-American men with syphilis, then watched them die slow, painful, and preventable deaths, even after they realized penicillin could cure them (50).
Skloot's writing here about the infamous Tuskegee syphilis experiments that weren't discontinued until the 1970s. The experiments showed that the scientific community had also managed to institutionalize racism, and that no outside entity was prepared to stop it. Skloot brings up these experiments to explain why the African American community is often understandably suspicious of medicine and science. These men were not treated as human beings.
He dreamed of never-ending life for those he deemed worthy, and death or forced sterilization for everyone else. He'd later praise Hitler for the "energetic measures" he took in that direction. (59)
Alexis Carrel had been honored with a Nobel Prize for his work on the suturing of blood vessels, but was best known for his attempts to cultivate the first immortal cell line from a chicken heart. Is it shocking that a surgeon who made important contributions to saving lives believed that some of them were more worthy of saving? Carrel supported policies of euthanasia for "unfit" types of people.
"You know other countries be buying her for twenty-five dollars, sometimes fifty? Her family didn't get no money out of it." (81)
Henrietta's cousin Cootie sums up one of the major moral dilemmas surrounding HeLa cells: scientists never informed the family of their use of the tissues, so they couldn't claim any of the profits. A bigger irony? Cootie suffered from polio, a disease for which HeLa cells had been used to create a vaccine.
"I started imagining her sitting in her bathroom painting those toenails, and it hit me for the first time that those cells we'd been working with all this time and sending all over the world, they came from a live woman." (91)
After Henrietta's death, Gey's lab assistant Mary Kubicek was called in to assist with the autopsy so she could get more cell samples. Which seemed like a good idea, until Mary is confronted with Henrietta's humanity. Skloot's book shows over and over again that breaches in medical ethics often happen when doctors and scientists dissociate their work from the human subjects who make it happen.
Black scientists and technicians, many of them women, used cells from a black woman to help save the lives of millions of Americans, most of them white. And they did so on the same campus—and at the very same time—that state officials were conducting the infamous Tuskegee syphilis studies. (97)
Skloot points out the irony of the first HeLa factory being established at the Tuskegee Institute, where black men were being exploited and allowed to die as research subjects. Several members of Henrietta's family will later point out the same irony: their mother's cells helped to create vaccines and drugs, none of which were readily available to her relatives because they were too expensive.
He repeated this process with about a dozen other cancer patients. He told them he was testing their immune systems; he said nothing about injecting them with someone else's malignant cells. (128)
This has gotta be the worst. Chester Southam's injection of HeLa cells into uninformed (and already ill) patients really pushed the envelope of ethical scientific experimentation. While there were doctors in his day who criticized these studies, there were even more who didn't think his experiments were a problem. In the end, Southam was really never punished, though policies did change to prevent this kind of research.
Research on inmates would come under scrutiny and start being heavily regulated about fifteen years later, because they'd be considered a vulnerable population unable to give informed consent. But at the time, prisoners nationwide were being used for research of all kinds—from testing chemical warfare agents to determining how X-raying testicles affected sperm count. (129)
This was a particularly thorny ethical dilemma, since prisoners don't elicit much sympathy from the general population. Like other marginalized populations (i.e. the poor and minorities), prisoners really needed protection from the scientific community, since a more "natural" code of ethics wasn't enough. Prisoners also had the added disadvantage of being unable to refuse participation in potentially harmful experiments.
The plan was that Mandel would have doctors on his staff inject twenty-two JCDH patients with cancer cells for Southam. But when he instructed his staff to give the injections without telling patients they contained cancer cells, three young Jewish doctors refused, saying they wouldn't conduct research on patients without their consent. (130)
If there's a silver lining to this story, it's this: some professionals in the medical and scientific community tried their best to protect patient rights, even when the law didn't. In this case, the doctors' refusals didn't save the patients from injection (there's always someone with flexible moral standards), but they were able to be part of the impetus for change. These three doctors were consider to be "overly sensitive" about the research because they were Jewish. Huh? How about "enlightened?"
"If the whole profession is doing it, how can you call it 'unprofessional conduct'?" (134)
It's a wicked hard question, and one asked by doctors who supported Chester Southam's uninformed consent approach to cancer research. The "everyone else is doing it" defense seemed to be enough for the medical community, but the NIH came to another conclusion: sometimes educated doctors don't have the common sense to notice when they're trampling on patients' human rights.
"Everybody always saying Henrietta Lacks donated those cells. She didn't donate nothing. They took them and didn't ask [...] What really would upset Henrietta is the fact that Dr. Gey never told the family anything—we didn't know nothing about those cells and he didn't care." (169)
And with that, Zakariyya sums up the reason for the Lacks' family anger at the scientific community: they didn't know. For the Lackses, the sense of betrayal is magnified by their loss of Henrietta and the feeling that Really Terrible Things had been done to her while she was being treated at Hopkins. At the time Dr. Gey worked on HeLa, it wasn't even a consideration whether the family should be told about it.
With the ability to identify genes from a blood sample or even a single cell, the risk of a blood draw was no longer just a minor infection or the pain of a needle stick—it was that someone could uncover your genetic information. It was about a violation of privacy. (187)
As technology evolves, the ethics of research and practice has to play catch-up. Sometimes medical advances come so quickly that people haven't thought about the consequences. As Skloot points out, genetic information can easily be used to discriminate against people, especially in terms of insurance or employment. There are so many unintended consequences of cutting-edge medical advances that ethicists are way behind the game.