bugra_suslu

** spoiler alert ** If I could give this book 10 stars, I would. It is an amazing story of Henrietta Lacks, whose cervical cancer cells became the first "immortal" cells in the study of human cell cultures. It covers the story of her life, death, and how her cells have changed science as we know it. In 1951, it was common for tissue to be taken without a patient's knowledge, especially when the patient was black. This book touches on how that simple fact changed a family's life. Much of the book discusses how it effected Henrietta's children once they found out that their mother's tumor had been taken and experimented on without her consent during the biopsy of the tumor. Upon her death, consent was given for an autopsy and some samples to be taken, but it was because her husband wasn't fully informed and thought that the tests would detect whether his and Henrietta's children had cancer. The book also discusses race issues and class issues that have touched the Lacks family's life. It discusses what care was common for black people in the early 50s and how many black people didn't get basic health care because they simply couldn't afford it and because it was well-known that black patients were often experimented on. It's heartbreaking to read about her family's complete misunderstanding of what had been done to their mother. When Henrietta's children were told about the fact that Henrietta's cells were still alive and being studied, 25 years after her death, they first thought that their mother had been kept alive all that time and was being experimented on. This wasn't because they were intellectually unable to understand it (as shown by how Deborah, Henrietta's surviving daughter, taught herself a lot of the science surrounding the testing done on the cell line established from Henrietta's cell sample), but because they were so poor that they weren't given basic science education and because of the lingering taint on the medical establishment that remained due to the Tuskegee airmen experiment and similar experiments. It's also heartbreaking to read about the fact that the Lacks' family had, at the time of the publishing of the book, no health insurance, even though their mother's cells have been sold and resold uncountable times. The race issues are also discussed when it comes to the care of Elsie, who was institutionalized when Henrietta became ill, because she was significantly developmentally disabled. Unfortunately, Elsie's life wasn't as well-documented as Henrietta's life, and many of her medical files were lost between the time of her death and when Skloot and Deborah begin their research into Elsie's life. But it's made clear that experiments were done on Elsie without the family's consent and that it was quite common at the time for experiments to be done on those in mental institutions. Lastly, this book touches on how the issue of the ownership of tissues taken for samples and payment for any treatments or cures to the owner of the tissues is evolving. As of right now, once you sign away the rights to your tissue, you sign away the monetary rights, but the law is still trying to find the "right" answer to this issue. I cannot recommend this book enough. Even if you're not interested in the scientific aspect of it, it's a book that should be read for the human side of the story, along with the medical ethics issues. I'll end with saying that there are some triggery things in this book, especially if you have issues surrounding medical things being done to you without your consent. But I think that should go without saying. Everything is handled as sensitively as possible, though. I found that the matter-of-fact matter in which Skloot writes makes it all a bit harder to digest, especially if you're very unused to these things being discussed so openly. But I think that style suits this story -- the things that happened to this family should make you uncomfortable.

2022-12-19 03:31