Christina's Reviews > The Immortal Life of Henrietta Lacks
The Immortal Life of Henrietta Lacks
by Rebecca Skloot (Goodreads Author)
by Rebecca Skloot (Goodreads Author)
This was an interesting read. While I applaud Skloot's attempt to present a fair look at the history of the HeLa cell line used in research labs all over the world, the book is clearly skewed toward sympathy for the family. Not that they don't deserve sympathy, but really, the problems of the family is NOT the fault of anyone involved with the cell line. Don't get me wrong, Henrietta and her family have had a hard life, and they do deserve some sympathy. But not for this particular issue.
The sad fact is that Henrietta died of an aggressive cancer, leaving her family to live their lives without her. That was not her fault or the fault of her family, but it was also not the fault of the hospital staff of Johns Hopkins. Yes, there was racial and socio-economic discrimination, but the fact remains that Henrietta was treated to best of the ability of the doctors at that time. Do we view the taking of cell samples from Henrietta without her permission as unethical today? Most people would say yes. But the law still remains unclear about that, and in 1954 that was most certainly not seen as unethical - it was common practice. So in the context of the time, the act was not unethical.
As for monetary compensation, Johns Hopkins did not profit from the growth of HeLa cells; in fact, the scientist that first worked with HeLa cells GAVE the cells away to many many many other labs FOR FREE. Those labs shared with other labs, etc. Are there companies that profit from the cells now? Yes. But they got the cells the same way everyone else did back then - for free. The company then did their own research to find a way to mass produce, store and ship living cells. At the point the first company started mass producing and selling the cells the identity of the donor was long hidden, and the fact the cells were widespread at that time made them common property, so people in possession of the cells could do pretty much anything they wanted with them.
And now for the part that is a little stickier - the family found out about Henrietta's cells, were (sort of) tricked into donating blood and cell samples and were kept in the dark about the cell line for decades. Was that right? NO, absolutely not. HOWEVER, I will point out that some of the subsequent anger, confusion and fear on the part of the family was due to their extreme lack of education rather than a malicious attempt to prey upon the Lacks family.
The science presented in the book is simplified somewhat for the lay person, which is nice, as is the look at the advances in medicine and research that HeLa cells have brought to the world. As a scientist, however, I think that Skloot's explanations were a little fuzzy and did not really dispel most people's image of how science works in the real world. Perhaps a little more objectivity and less family bonding would have made this a better book.
In conclusion: though Skloot claims she tries to give an unbiased view of the history of HeLa cells and the family from whence it came, I am concerned that lay people who read this will not understand some of the finer points and it will increase the already rampant fear of science that pervades American culture. The majority of Americans are woefully un-educated in the sciences, to the point that many people view it as no different than magic,but weirder and scarier.
The sad fact is that Henrietta died of an aggressive cancer, leaving her family to live their lives without her. That was not her fault or the fault of her family, but it was also not the fault of the hospital staff of Johns Hopkins. Yes, there was racial and socio-economic discrimination, but the fact remains that Henrietta was treated to best of the ability of the doctors at that time. Do we view the taking of cell samples from Henrietta without her permission as unethical today? Most people would say yes. But the law still remains unclear about that, and in 1954 that was most certainly not seen as unethical - it was common practice. So in the context of the time, the act was not unethical.
As for monetary compensation, Johns Hopkins did not profit from the growth of HeLa cells; in fact, the scientist that first worked with HeLa cells GAVE the cells away to many many many other labs FOR FREE. Those labs shared with other labs, etc. Are there companies that profit from the cells now? Yes. But they got the cells the same way everyone else did back then - for free. The company then did their own research to find a way to mass produce, store and ship living cells. At the point the first company started mass producing and selling the cells the identity of the donor was long hidden, and the fact the cells were widespread at that time made them common property, so people in possession of the cells could do pretty much anything they wanted with them.
And now for the part that is a little stickier - the family found out about Henrietta's cells, were (sort of) tricked into donating blood and cell samples and were kept in the dark about the cell line for decades. Was that right? NO, absolutely not. HOWEVER, I will point out that some of the subsequent anger, confusion and fear on the part of the family was due to their extreme lack of education rather than a malicious attempt to prey upon the Lacks family.
The science presented in the book is simplified somewhat for the lay person, which is nice, as is the look at the advances in medicine and research that HeLa cells have brought to the world. As a scientist, however, I think that Skloot's explanations were a little fuzzy and did not really dispel most people's image of how science works in the real world. Perhaps a little more objectivity and less family bonding would have made this a better book.
In conclusion: though Skloot claims she tries to give an unbiased view of the history of HeLa cells and the family from whence it came, I am concerned that lay people who read this will not understand some of the finer points and it will increase the already rampant fear of science that pervades American culture. The majority of Americans are woefully un-educated in the sciences, to the point that many people view it as no different than magic,but weirder and scarier.
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Cristy
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rated it 5 stars
Aug 11, 2010 08:37am
Frankly, people should be suspicious and afraid of science and medicine. The point of Informed Consent is to dispell erroneous notions and educate the prospective patient about the process, risks and alternatives to a specific treatment (or research study). The Lacks family incomprehension *is* the fault of the facility and the professionals; it is *their* duty and responsibility to provide Informed Consent, which not only includes disseminating information but ensuring understanding of that information. The doctors/researchers are the experts after all, the people in authority, and they are required (by law and ethical guidelines) to protect, respect and care for their patients (or study subjects). That simply didn't happen for the Lacks family, and worse, it doesn't happen for many people every day. Frankly, it's an unexcusable disconnect that needs to be remedied.
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Cristy wrote: "Frankly, people should be suspicious and afraid of science and medicine. The point of Informed Consent is to dispell erroneous notions and educate the prospective patient about the process, risks a..."NO NO NO. You miss the point entirely, Cristy. Fear of science and medicine is NOT how to react to this. And no, it was not the job of the institutions or the scientific and medical professionals to give the family 12+ YEARS of education that they had missed while growing up in the increasingly anti-intellectualist environment of America. Informed Consent can only go as far as the person receiving the information has the education to understand it. That is the real problem here, and one that most of America suffers from. How can a doctor explain the risks and benefits of making medical decisions when the person they are talking to has no idea of the basic science behind the procedure or the disease? When they think there is a magical element to the disease and/or the cure? It's like trying to explain to your cat why she has to go to the vet. There is something deeply wrong with the educational system in this country when people think that doctors and scientists are out to get them, when in reality most of them are only trying to help. And I repeat, Informed Consent can't teach people the YEARS of education they miss out on because they or their parents or friends or politicians fear and despise science. What is needed is better education, not more fear. Fear breeds hate, hate breeds violence, violence breeds morons with guns who shoot scientists and doctors.
We are ants and as such, our little corpses belong to the hive. And it's not just medicine. Numerous books and movies delicately skirt the topic that dead people are obviously delicious!@Christina: agree. I'm an expert (in something, I swear it) and people would be best telling me their problem and standing back. It's hard but I try to do that myself too, with the doctor, the kitchen contractor, the SW guy. The trick is to find someone good and trust them. Otherwise in some sense you're all alone. Now plenty of people in many fields are incompetent and I'm sure docs are no exception, but informed consent is no answer, it's a bandaid on a legal problem.
Cristy wrote: "that simply didn't happe for the Lacks family..."I really got a different impression. I felt the Lacks patient was well treated, and somewhat resistant to care actually. The FAMILY is not in it. I reacted negatively to that theme of the book. Everybody wants a buck. My grandma grew a goiter in the shape of the face of Jesus, so I should be paid something.
It's luck folks, not something they deserved. I wish we could get away from the lottery culture. When people die strangely they should be autopsied for the good of humanity. (That's the serious version of my earlier puerile suggestion "we should eat 'em!")
