Henrietta lacks

[pktechgirlbackup]

I'm 20% through The Immortal Life of Henrietta Lacks (by Rebecca Skloot) and it has every appearance of being one of those books that changes my mind about things: it's well written, well researched, not the approach I would take but not so alien as to be useless, and in an area I don't understand well. Broadly, the book is about cancerous cells that were taken from a (black, poor) woman and became the first human cells to be successfully grown in a lab. These cells have gone on to do all sorts of important things for science (which worries me, because they're CANCER CELLS being used as models for human, and cancer cells THAT COULD SURVIVE IN CONDITIONS NOTHING ELSE COULD* at that). But they were taken without permission, and while her medical care was no Tuskegee, her story shines an uncomfortable light on just how bad the best medical care in the country for poor black people was at the time. It uses her descendents' medical care to talk about the care available to poor black people now. I don't know if this was intentional, since she hasn't mentioned that cervical cancer is caused by HPV, but the fact that her cancer was caused by an STI, of which she caught numerous and varied from her husband, certainly makes me think about issues of sexual violence, consent, coercion, and 1950s gender roles. And there's a lot about race in there too. In short, despite my well earned reputation for enjoying really astonishingly depressing books, I'm finding this one a little stressful. Since I could easily see my opinion change over the course of reading this, and I have a tendency to forget I ever held another opinion when that happens, especially when the old opinion was muddled and weak, I'm recording some of my thoughts on the matter now.

1. Bodily integrity and control are very important and should be respected
   
2. Patients are idiots and keep refusing to let science use things they're getting removed anyway.
   
3. but it's not consent if you're not free to say no
   
4. but they're so stupid.
   
5. I once had an optometrist (optomologist? the doctor one) slip in a form saying he could use results from my exam in research studies without even notifying me. And it was opt-out. Now, it would have been nice to get a note, but I totally understand why he didn't want to bother with notification. But I really hate it when people, especially doctors, slip in things hoping you won't notice, so I opted out. Just to piss them off.
   
6. Even though the theoretical universe says that it shouldn't matter if your doctor anonymously writes up your case, I think that human intuition is that no one can serve two masters, and allowing them to write about you will subtly shift their priorities to your detriment.
   
7. This isn't such a big deal when it's your barista mining you for poetry material, because you feel confident in your ability to assess his coffee making skills. But it's a really big deal when you're trusting someone else about something very important that you don't understand at all.
   
8. The reflexive no may be a desperate attempt to maintain control in a situation where you have so very little of it.
   
9. it was common belief at the time that doctors should be allowed to do research on public ward patients, since they weren't paying for their care
   
10. I am okay with this, for very limited definitions of the word "research". Unnecessary medication? no. But I think it's ridiculous that we don't even track the outcomes for procedures medicare/aid pay for. And I think I'm okay with free patients being required to give medically unnecessary tissue samples, if it can be done without harm.
    
11. did you know that hospitals keep the foreskins of babies they circumsize and sell them for thousands of dollars? On one hand, the families didn't want them before, why should they now? On the other hand THOUSANDS OF DOLLARS. Also, it makes me suspicious of the AMA's support for a procedure that: 1. has no medical justification when done on infants. 2. has a nontrivial number of people saying it's abhorrent.
    
12. It's sort of like organ donors. You're allowed to not give up your organs, but not for stupid reasons like "I can't be bothered to think about something so icky until it's too late."
    
13. Lacks's family complains specifically about not being able to afford medical care when their mother gave so much to science, especially when parts of science are charging other parts of science $25 a vial for it. And yeah, that does feel extremely unfair.
    
14. I think this stems from the human intuition that if you give something to X, even something that costs you nothing, X owes you (or your descendants) something of the returns they got with that object.
    
15. This is logically incorrect. Either science owes them money (which can be spent on their choice of medical care, education, high priced call girls, or anything else they might desire) or it doesn't.
    
16. early chemotherapy apparently consisted of taping radium to the cervix. I can't tell you how unpleasant it is to listen to that while you're biking.
    
17. It feels unfair that some company makes $25/vial off of Lacks's cells and her family gets nothing.
    
18. The lab had gone through hundreds if not thousands of tissue cultures before happening to find one that worked. Tracking all of those would have been a nightmare.
    
19. But letting them count expenses against these profits opens the door to hollywood accounting.
    
20. normally I'd just say "let the market sort it out", and if they can't afford to do the research, so be it, but I want to be young and pretty forever, and discouraging medical research does not jibe with those goals.
    
21. This is related to a problem with medical patents: if you have an awesome idea that relies on patents from 10 different companies (easy to do in medicine), you basically can't make it, because you'll never be able to negotiate a good enough deal with all of them. Last I read there are some workarounds for this involving standard contracts, but it's no panacea.
    
22. Partially because if you're a bureaucrat who kills a deal that would have made the company millions, no one will ever know. But if you're the bureaucrat who sold a patent too cheap, you're dead.
    

*It's unclear at this point in the book if Lacks's cells survived because of something particular to them, or because the scientist just happened to get the mix right at that point.