The Immortal Life of Henrietta Lacks
- 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. And as Howard Jones once wrote, “Hopkins, with its large indigent black population, had no dearth of clinician material.”
- It started in the thirties, when U.S. Public Health Service researchers at the Tuskegee Institute decided to study how syphilis killed, from infection to death. 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.
- But 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, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite.
- This was a time when “benevolent deception” was a common practice -- doctors often withheld even the most fundamental information from their patients, sometimes not giving them any diagnosis at all. They believed it was best not to confuse or upset patients with frightening terms they might not understand, like cancer. Doctors knew best, and most patients didn't question that.
- There was no way of knowing whether or how Henriett'a's treatment would have differed if she'd been white. According to Howard Jones, Henrietta got the same care any white patient would have; the biopsy, the radium treatment, and radiation were all standard for the day. But several studies have shown that black patients were treated and hospitalized at later stages of their illnesses than white patients. And once hospitalized, they got fewer pain medications, and had higher mortality rates.
- 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.
- Research on inmates would later 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.
- When Southam began injecting people with HeLa cells in 1954, there was no formal research oversight in the United States. Since the turn of the century, politicians had been introducing state and federal laws with hopes of regulating human experimentation, but physicians and researchers always protested.
- “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.”
- “She's the most important person in the world and her family is living in poverty. If our mother so important to science, why can't we get health insurance?”
- Years later, when I asked McKusick if anyone had tried to get informed consent from the Lacks family, he said, “I suspect there was no effort to explain anything in great detail. But I don't believe anyone would have told them that we were testing for cancer because that wasn't the case. They would have just said, 'Your mother had cancer, the cells from that cancer have been growing all over the place and studied in great detail, in order to understand that better, we would like to have that blood from you people.'”
- 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.
- What we do know is that today, Invitrogen sells HeLa products that cost anywhere from $100 to nearly $10,000 per vial. A search of the U.S. Patent and Trademark Office database turns up more than seventeen thousand patents involving HeLa cells. And there's no way to quantity the professional gain many scientists have achieved with the help of HeLa.
- A lawyer might have told the Lackses they could sue on the grounds of privacy violation or lack of informed consent. But they Lackses didn't talk to a lawyer -- they didn't even know anyone had done research on their DNA, let alone published it.
- So 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.
- Nearly seven years after Moore originally filed suit, the Supreme Court of California ruled against him in what became the definitive statement on this issue: When tissues are removed from your body, with or without your consent, any claim you might have had to owning them vanishes.
- “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.”
- How you should feel about all this isn't obvious. It's not as if scientists are stealing your arm or some vital organ. They're using tissue scraps you parted with voluntarily. Still, that often involves someone taking part of you. And people often have a strong sense of ownership when it comes to their bodies. Even tiny scrap of them ... And at this point no case law has fully clarified whether you own or have the right to control your tissues.
- The Federal Policy for the Protection of Human Subjects, also known as the Common Rule, requires informed consent for all human-subject research. But in practice, most tissue research isn't covered because: (1) it's not federally funded, or (2) the researcher never learns the identify of the “donors” or has firsthand contact with them, in which case it's not considered research on humans.