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A review by konvineo
The Immortal Life of Henrietta Lacks by Rebecca Skloot
4.0
I'm very happy that I finally got around to reading this book, but I do think it's a hard book to put a rating on. On one hand I think it's very important to know about people like Henrietta Lacks (especially since I used to study biotechnology and biology, and I'm pretty sure I encountered the word HeLa). On the other hand I think it's not quite right that this book was written by a white woman. It doesn't hit right when reading, and I feel that it at some points in the point that there might be a lack of context. The author does talk about her being white telling a black family's story in the book, so there's that. Also, I'm at a 50/50 split in terms of actually liking the way Skloot writes.
That said, onto other thought on the book.
Fundamentally, I'm grateful for reading the story of Henrietta Lacks and her family. I'm also of the opinion that in cases such this the family deserve to be paid some kind of royalties for the use of their wife/mother's tissues. I know US law doesn't allow ownership by a "donor" of tissues, but I think I'm on the side that says that should kind of be a thing. If we bypass the ownership because current laws, then I think another argument for royalties to the Lacks family would be the missing anonymity, and because of that researchers around the world potentially know a lot about the Lackses. Also, I think royalties would be in order as reparations for what the family went through, because they were treated awful.
How some doctor or researcher that came into contact with the family didn't puzzle out that the family didn't understand what happened to Henrietta is beyond me. I know "times were different", but later on, the fact that noone didn't sit down and talk the family through everything frustrates me on the family's behalf. The fact that Deborah (Henrietta's daughter) walked around for years fearing she'd get sick like her mother, because doctors didn't talk to her is deplorable. Doctors need to communicate with their patients, and they need to communicate until everybody understands what's going on.
I am on the side of science, but you still treat people like people. Doctors should inform patients or participants in experiments about what is happening. The fact that some of the doctors, who came into contact with the Lackses, didn't really seem all that sorry about how they handled it, pisses me off. The worst thing I read was what Dr. Susan Hsu said. She starts her message to the family okay, what with talking about Henrietta's contribution to science, but she totally lost me when she ended with science has come far, so your family is welcome to come in, and we can take another blood sample for testing. That feels so tone deaf and ignorant, and I seriously hope that it's a language barrier that makes it sound so awful.
Anyway, I'm happy to know a lot more about Henrietta and her family, and the book has made me want to know more about the Tuskegee experiments, because that's another important story.
That said, onto other thought on the book.
Fundamentally, I'm grateful for reading the story of Henrietta Lacks and her family. I'm also of the opinion that in cases such this the family deserve to be paid some kind of royalties for the use of their wife/mother's tissues. I know US law doesn't allow ownership by a "donor" of tissues, but I think I'm on the side that says that should kind of be a thing. If we bypass the ownership because current laws, then I think another argument for royalties to the Lacks family would be the missing anonymity, and because of that researchers around the world potentially know a lot about the Lackses. Also, I think royalties would be in order as reparations for what the family went through, because they were treated awful.
How some doctor or researcher that came into contact with the family didn't puzzle out that the family didn't understand what happened to Henrietta is beyond me. I know "times were different", but later on, the fact that noone didn't sit down and talk the family through everything frustrates me on the family's behalf. The fact that Deborah (Henrietta's daughter) walked around for years fearing she'd get sick like her mother, because doctors didn't talk to her is deplorable. Doctors need to communicate with their patients, and they need to communicate until everybody understands what's going on.
I am on the side of science, but you still treat people like people. Doctors should inform patients or participants in experiments about what is happening. The fact that some of the doctors, who came into contact with the Lackses, didn't really seem all that sorry about how they handled it, pisses me off. The worst thing I read was what Dr. Susan Hsu said. She starts her message to the family okay, what with talking about Henrietta's contribution to science, but she totally lost me when she ended with science has come far, so your family is welcome to come in, and we can take another blood sample for testing. That feels so tone deaf and ignorant, and I seriously hope that it's a language barrier that makes it sound so awful.
Anyway, I'm happy to know a lot more about Henrietta and her family, and the book has made me want to know more about the Tuskegee experiments, because that's another important story.