HeLa and the ethics of tissue research
Aug. 22nd, 2012 07:42 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
bloodygranuaileLast weekend, after staying up late drinking and giving myself a terrible headache, I decided to take a break from my summer plan of only reading foofy fantasy novels and read something that would make me stop feeling so whiny and self-pitying about the headache. Then I tucked myself into bed for the weekend with a lot of water and my roommate's copy of The Immortal Life of Henrietta Lacks.
Mission was a success. Will never complain about hangovers again.
This book tells, more or less, three stories. One, it tells the story of the HeLa line of cells--the first immortal line of human cells to be successfully cultured, and therefore an extremely important cell line in medical history, and the founding line of a multi-million dollar industry in cultivating cells for all sorts of tissue research. HeLa cells have even been sent to space, to see what being in space does to cells. This story is very cool.
Second, but definitely most important, this book tells the story of the woman the cells came from and her family. The cells were taken in the 1950s, when medical ethics and particularly tissue research ethics were a bit... loose. They came from the tumor of a cervical cancer patient named Henrietta Lacks, a tobacco farmer who was being treated in the "colored" public ward of Johns Hopkins. Immortal Life chronicles her life, her multitude of other health problems, and her quick but incredibly painful death from the extremely aggressive cancer. (The autopsy report said that by the time she died, she had so many tumors that when they cut her open it looked like her body had been "stuffed with pearls.") It also talks about her family, and particularly the lives of her children following her death, and their experiences with the medical establishment and learning about their mother. It's a really disturbing tale, as the family was never in any way compensated and didn't even know their mother's cells had been taken for twenty years afterwards. They couldn't afford health insurance, and when Johns Hopkins did offer them affordable doctor's visits, it was to do research on them without informed consent. The story talks about a lot of issues about the intersections of class, race, and the medical establishment, particularly when it comes to access and patients' rights.
The third story is the story of Rebecca Skloot actually going about the process of writing the book, which some people found annoying or off-topic or self-centered, but I liked it--it provided a sort of detective-story framework to organize the book around, which I like in narrative nonfiction, and it also allows for us to get to know Henrietta's descendents better (and you get a really good first-hand look at their attitudes towards white journalists poking around).
Overall, I found this book to be very interesting, very well-written, and very informative about a wide range of things. It is also deeply disturbing. Henrietta Lacks' cancer treatment and the development of her cancer cells into the HeLa line happened around the same time as the Tuskegee Institute syphilis studies, which I had heard of, and the "Mississippi appendectomies"--hysterectomies done on black women without their knowledge or consent while they were in hospitals for other medical care, so that doctors in training could practice the procedure--which I had not. The history of Johns Hopkins' treatment of the patients in its "colored" facilities is very spotty--while the ward was created with benevolent intentions (not all medical practices had any programs for low-income people at all, and many refused to treat black patients as well), the general attitude seemed to be that, for its charity, the hospital was entitled to basically use the colored ward as a research lab, without informing its patients. But John Hopkins starts to looks like a pretty warm and fuzzy kind of place when we get to the part of the story where Deborah Lacks and Rebecca Skloot try to track down what happened to Henrietta's daugher Elsie, who had seizures and was mentally retarded (probably as a result of Henrietta's syphilis, which may also be responsible for the partial deafness is two of her other children). When Elsie got too big for Henrietta to handle on her own, she was sent to the Crownsville psychiatric center, which at that time was known as the Hospital for the Negro Insane of Maryland. If there's one thing in the world more terrifying and disturbing to read about than the history of mental health care, it is the history of mental health care for minorities. Overcrowded, understaffed, and with almost no educational or recreational resources for the inhabitants--a disturbingly high percentage of whom were children--Crownsville's mortality rate was twice as high as its discharge rate. The book also describes a number of the painful treatments that were in practice at the time, including the practice of draining all the fluid from the brain cavity and filling it with air so that they could X-ray the brain without interference--a process that caused excruciating headaches in the patient, as well as, obviously, increasing the risk of brain damage until enough replacement fluid was produced. (Like I said. Never complaining about mere hangover headaches again.) So... yeah, that part really upset me. There's been a lot of really shady stuff done by the medical establishment over the years. If you can handle reading about it, then this book is great.
Also, if you buy this book, instead of borrowing it from someone like I did (which I now kinda feel bad about), part of the proceeds go to the Henrietta Lacks Foundation, which provides education and healthcare grants to people whose bodies or tissues have contributed to biomedical research without compensation (and particularly the ones who were experimented on without consent) and their descendants. So at least some people are trying to make things right.
Mission was a success. Will never complain about hangovers again.
This book tells, more or less, three stories. One, it tells the story of the HeLa line of cells--the first immortal line of human cells to be successfully cultured, and therefore an extremely important cell line in medical history, and the founding line of a multi-million dollar industry in cultivating cells for all sorts of tissue research. HeLa cells have even been sent to space, to see what being in space does to cells. This story is very cool.
Second, but definitely most important, this book tells the story of the woman the cells came from and her family. The cells were taken in the 1950s, when medical ethics and particularly tissue research ethics were a bit... loose. They came from the tumor of a cervical cancer patient named Henrietta Lacks, a tobacco farmer who was being treated in the "colored" public ward of Johns Hopkins. Immortal Life chronicles her life, her multitude of other health problems, and her quick but incredibly painful death from the extremely aggressive cancer. (The autopsy report said that by the time she died, she had so many tumors that when they cut her open it looked like her body had been "stuffed with pearls.") It also talks about her family, and particularly the lives of her children following her death, and their experiences with the medical establishment and learning about their mother. It's a really disturbing tale, as the family was never in any way compensated and didn't even know their mother's cells had been taken for twenty years afterwards. They couldn't afford health insurance, and when Johns Hopkins did offer them affordable doctor's visits, it was to do research on them without informed consent. The story talks about a lot of issues about the intersections of class, race, and the medical establishment, particularly when it comes to access and patients' rights.
The third story is the story of Rebecca Skloot actually going about the process of writing the book, which some people found annoying or off-topic or self-centered, but I liked it--it provided a sort of detective-story framework to organize the book around, which I like in narrative nonfiction, and it also allows for us to get to know Henrietta's descendents better (and you get a really good first-hand look at their attitudes towards white journalists poking around).
Overall, I found this book to be very interesting, very well-written, and very informative about a wide range of things. It is also deeply disturbing. Henrietta Lacks' cancer treatment and the development of her cancer cells into the HeLa line happened around the same time as the Tuskegee Institute syphilis studies, which I had heard of, and the "Mississippi appendectomies"--hysterectomies done on black women without their knowledge or consent while they were in hospitals for other medical care, so that doctors in training could practice the procedure--which I had not. The history of Johns Hopkins' treatment of the patients in its "colored" facilities is very spotty--while the ward was created with benevolent intentions (not all medical practices had any programs for low-income people at all, and many refused to treat black patients as well), the general attitude seemed to be that, for its charity, the hospital was entitled to basically use the colored ward as a research lab, without informing its patients. But John Hopkins starts to looks like a pretty warm and fuzzy kind of place when we get to the part of the story where Deborah Lacks and Rebecca Skloot try to track down what happened to Henrietta's daugher Elsie, who had seizures and was mentally retarded (probably as a result of Henrietta's syphilis, which may also be responsible for the partial deafness is two of her other children). When Elsie got too big for Henrietta to handle on her own, she was sent to the Crownsville psychiatric center, which at that time was known as the Hospital for the Negro Insane of Maryland. If there's one thing in the world more terrifying and disturbing to read about than the history of mental health care, it is the history of mental health care for minorities. Overcrowded, understaffed, and with almost no educational or recreational resources for the inhabitants--a disturbingly high percentage of whom were children--Crownsville's mortality rate was twice as high as its discharge rate. The book also describes a number of the painful treatments that were in practice at the time, including the practice of draining all the fluid from the brain cavity and filling it with air so that they could X-ray the brain without interference--a process that caused excruciating headaches in the patient, as well as, obviously, increasing the risk of brain damage until enough replacement fluid was produced. (Like I said. Never complaining about mere hangover headaches again.) So... yeah, that part really upset me. There's been a lot of really shady stuff done by the medical establishment over the years. If you can handle reading about it, then this book is great.
Also, if you buy this book, instead of borrowing it from someone like I did (which I now kinda feel bad about), part of the proceeds go to the Henrietta Lacks Foundation, which provides education and healthcare grants to people whose bodies or tissues have contributed to biomedical research without compensation (and particularly the ones who were experimented on without consent) and their descendants. So at least some people are trying to make things right.
