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Science calls her HeLa and she’s all over the world in medical facilities, in all the computers and the Internet everywhere.
But I always have thought it was strange, if our mother cells done so much for medicine, how come her family can’t afford to see no doctors?
After writing “HeLa,” for Henrietta and Lacks, in big black letters on the side of each tube, Mary carried them to the incubator room that Gey had built just like he’d built everything else in the lab: by hand and mostly from junkyard scraps, a skill he’d learned from a lifetime of making do with nothing.
During his second year in medical school, he rigged a microscope with a time-lapse motion picture camera to capture live cells on film. It was a Frankensteinish mishmash of microscope parts, glass, and 16-millimeter camera equipment from who knows where, plus metal scraps, and old motors from Shapiro’s junkyard.
Gey was a reckless visionary
let my old lady cells talk to you and leave me alone,” he snapped. “I had enough ’a you people.” Then he hung up.
Carrel wasn’t interested in immortality for the masses. He was a eugenicist: organ transplantation and life extension were ways to preserve what he saw as the superior white race,
He wrongly believed that light could kill cell cultures, so his laboratory looked like the photo negative of a Ku Klux Klan rally, where technicians worked in long black robes, heads covered in black hoods with small slits cut for their eyes. They sat on black stools at black tables in a shadowless room with floors, ceilings, and walls painted black. The only illumination came from a small, dust-covered skylight.
Tissue culture was the stuff of racism, creepy science fiction, Nazis, and snake oil. It wasn’t something to be celebrated. In fact, no one paid much attention to it at all.
it was understood that black people didn’t question white people’s professional judgment.
Cootie’s skin was light enough to pass for Latino, so when he got sick at nine years old, a local white doctor snuck him into the nearest hospital, saying Cootie was his son, since the hospitals didn’t treat black patients.
Though no law or code of ethics required doctors to ask permission before taking tissue from a living patient, the law made it very clear that performing an autopsy or removing tissue from the dead without permission was illegal.
From the moment the Collier’s article appeared until the seventies, the woman behind the HeLa cells would be known most often as Helen Lane, and sometimes as Helen Larson, but never as Henrietta Lacks. And because of that, her family had no idea her cells were alive.
he was withholding information because patients might have refused to participate in his study if they’d known what he was injecting.
Nuremberg Code,
“The voluntary consent of the human subject is absolutely essential.”
Those who did know about it often thought of it as “the Nazi code,” something that applied to barbarians and dictators, not to American doctors.
“Every human being has an inalienable right to determine what shall be done with his own body. These patients then had a right to know . . . the contents of the syringe: and if this knowledge was to cause fear and anxiety or make them frightened, they had a right to be fearful and frightened and thus say NO to the experiment.”
Southam’s lawyers argued, “If the whole profession is doing it, how can you call it ‘unprofessional conduct’?”
“There is evidenced in the record in this proceeding an attitude on the part of some physicians that they can go ahead and do anything . . . and that the patient’s consent is an empty formality. With this we cannot agree.”
“You’d be surprised how many people disappeared in East Baltimore when I was a girl,” Bobbette said, shaking her head. “I’m telling you, I lived here in the fifties when they got Henrietta, and we weren’t allowed to go anywhere near Hopkins. When it got dark and we were young, we had to be on the steps, or Hopkins might get us.”
McKusick’s research on the Lacks family coincided with the beginning of a new era of genetic research, in which the concept of risk to patients would change completely. 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 violation of privacy.
McKusick did not explain why he was having someone draw blood from Deborah. Instead he told her about Henrietta’s cells being used for the polio vaccine and genetic research; he said they’d gone up in early space missions and been used in atomic bomb testing. Deborah heard those things and imagined her mother on the moon and being blown up by bombs. She was terrified and couldn’t stop wondering if the parts of her mother they were using in research could actually feel the things scientists were doing to them.
when I explained to her that the Lackses thought she was testing them for cancer, and that they were upset about scientists using the cells without their knowledge, she was shocked. “I feel very bad,” she said. “People should have told them. You know, we never thought at that time they did not understand.”
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.
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.
I started saying it was just Henrietta’s cells scientists had cloned, not Henrietta herself. But Deborah waved her hand in my face, shushing me like I was talking nonsense, then fished a videocassette from the pile and held it up for me to see. It said Jurassic Park on the spine.
“Truth be told, I can’t get mad at science, because it help people live, and I’d be a mess without it. I’m a walking drugstore! I can’t say nuthin bad about science, but I won’t lie, I would like some health insurance so I don’t got to pay all that money every month for drugs my mother cells probably helped make.”
“This child will someday know that her great-grandmother Henrietta helped the world!” Pullum yelled. Then he pointed around the room at Davon and JaBrea’s other cousins, saying, “So will that child . . . and that child . . . and that child. This is their story now. They need to take hold of it and let it teach them they can change the world too.”
Sonny had a quintuple bypass in 2003, when he was fifty-six years old – the last thing he remembered before falling unconscious under the anesthesia was a doctor standing over him saying his mother’s cells were one of the most important things that had ever happened to medicine. Sonny woke up more than $125,000 in debt because he didn’t have health insurance to cover the surgery.
“Patients turn to law as a last resort when they don’t see their participation being acknowledged.”
the ruling didn’t prevent commercialization; it just took patients out of the equation and emboldened scientists to commodify tissues in increasing numbers.
