I have lots of feels about The immortal life, partly because I spent the first part of my career working directly on cell lines including HeLa. There's also a slightly weird thing where Lacks' story was relatively well known in the UK, I mean at least it was taught in my undergraduate course and there was a fairly widely watched BBC documentary (which IIRC is one of Skloot's key sources) and it was common currency among people who pay attention to the history of science at all. But it seems like it wasn't known at all in the US until the book came out. So there's a bit of a breathless, wow, amazing revelation, you never knew!!!! tone that felt off to me, when the book was recapitulating things I already knew albeit in less detail.
I think you're absolutely right that Skloot is a highly educated white person talking to educated readers about poor, illiterate subjects, and that's definitely a slant.
For me the strength of the book is also its weakness. It's a great journalistic technique to personalize the story by focusing on one subject, Lacks and her family. But also, the actual direct harm done to Lacks herself is minimal, whereas the harm done to poor people and especially poor Black people by the medical establishment is immense, so maybe Lacks herself is not the best example however vivid. I predict that if Lacks had in fact been able to give free and fully informed consent, she would have been fine with her biopsy material being used to kick start a generation of amazing medical advances. So the problem is not that her cells were used to establish the first immortalized cancer cell line, it's that in general medical advances are a source of corporate profit first and actual health benefit for rich privileged people second, and health benefit for those with fewest life chances and worst health last if at all.
I also feel that the ethical questions around making profits from biological material are growing ever more acute, because now it's not just patient tissues and cells making profits for others without benefitting them, it's genetic information. And the direct harm of profiting from someone else's genetic data is even more nebulous than the direct harm of profiting from their cells, but there's even less established precedent for who exactly owns this potentially highly valuable asset.
no subject
I think you're absolutely right that Skloot is a highly educated white person talking to educated readers about poor, illiterate subjects, and that's definitely a slant.
For me the strength of the book is also its weakness. It's a great journalistic technique to personalize the story by focusing on one subject, Lacks and her family. But also, the actual direct harm done to Lacks herself is minimal, whereas the harm done to poor people and especially poor Black people by the medical establishment is immense, so maybe Lacks herself is not the best example however vivid. I predict that if Lacks had in fact been able to give free and fully informed consent, she would have been fine with her biopsy material being used to kick start a generation of amazing medical advances. So the problem is not that her cells were used to establish the first immortalized cancer cell line, it's that in general medical advances are a source of corporate profit first and actual health benefit for rich privileged people second, and health benefit for those with fewest life chances and worst health last if at all.
I also feel that the ethical questions around making profits from biological material are growing ever more acute, because now it's not just patient tissues and cells making profits for others without benefitting them, it's genetic information. And the direct harm of profiting from someone else's genetic data is even more nebulous than the direct harm of profiting from their cells, but there's even less established precedent for who exactly owns this potentially highly valuable asset.