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For me, the coolest story in The Immortal Life of Henrietta Lacks was just how virulent her cells had become. A good number of other human cell cultures had either never been truly successful, or had been contaminated and outcompeted by the HeLa cells, driving them to extinction. There were hints of this very early on, but it couldn't be conclusively proven until genetic marker identification became available. When it did, it showed that a lot of research that researchers thought they were doing on specific tissue-type cells (e.g. liver cells) had in fact been done on cervical cancer cells. Oops. If this were true, it would have completely invalidated thousands, if not tens or hundreds of thousands, of peoples life work. So they did what any human being would do under the circumstances and denied it was a problem. (Spoiler: it definitely was, and their lifes work was invalid).

The fact that one little mistake could invalidate everything someone had done from age 22 on is a side effect of how specialized scientific research has become. You spend years in general education, then field education, then your tiny tiny subspeciality. Then you spend all your time working on one little problem, probably with one method because learning new methods or new problems just takes too much time.

Contrast this with the scientists in The Enlightenment, which I am an expert on because I read Quicksilver, a fiction book about many of them. Admittedly they wasted a lot of time on ideas that later information revealed to be batshit insane, and they were constantly worried about being scooped by one another, but they had substantially fewer eggs in any one basket. If your calculus proof was scooped by Leibniz, you still had your study of lenses to feel good about. And the guy you beat to lenses can feel good about founding cell biology. It was in many ways a more humane system than our current one, which requires such specialization that you're boxed in by necessity.

I feel like this might be tied in to how insane competition for schooling has been. You have to get into the gifted kindergarten so you can get pre-calc in middle school so you get calc in high school and finish your engineering pre-reqs by sophmore year so you can begin to specialize. It's painful to those involved and I don't even think it's that efficient.
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In 2008, I had a combination wisdom tooth removal/jaw surgery to correct chronic pain in my jaw dating back to 2005. If you haven't had chronic pain, I'm not sure if I can convey how stupid it makes you. A mere six months after it started I told the dentist to go ahead and do the filling replacement under partial Novocaine, because the bitch didn't believe me when I told her I needed more and while she had injected a lot, wasn't doing so any faster than my body could clear it out, and I was desperate to get it treated. My dentist recommended the two surgeries after the second root canal failed to help, but it had to be scheduled out several months because I was terrified of general anesthetic* and insisted both be done at once, even though they required separate practitioners. I was contracting at the time and had made job-taking decisions based in part on scheduling around this surgery. Oh, and I had to get up very early in the morning for it, so I was sleepy.

So when the receptionist told me it was standard practice to remove biopsied tissue to check for cancer, I signed the form. According the legal chapter in The Immortal Life of Henrietta Lacks, the doctors and/or lab can legally do whatever they want with that tissue. If I had spontaneously donated that, that wouldn't bother me. If I'd been informed ahead of time and had carefully considered it, it wouldn't bother me. But I was not in a position to do any of those. I would have cut my wrist and signed the form in blood if it would get me into surgery faster. And my chronic pain wasn't even that painful, as these things go.

I'm pretty convinced that what bothers people the most isn't that someone somewhere is making money off their tissues. It's that we're taking advice on things we don't understand from people who suspect don't like us very much, and while I'm sure no very few dentists have recommended surgery for the sole purpose of extracting tissue to sell for profit, the human brain forms associations. And if you have a more positive association with things that involve tissue removal you're going to, on the margin, recommend more tissue removal. And we're all so terrified of doing the wrong thing and so desperate to trust an authority figure that we seize on the one thing we can control.

And then there's the fact that they can keep things like the state-mandated blood draws for genetic testing. That's just bullshit.

That was really depressing, especially if you know that the surgery didn't help me either, and that it's impossible to know whether the initial trauma, the initial dentist fuck ups, the improperly anesthetized filling replacement, the root canals, or the surgery caused the lingering problem. So to end on a lighter note: oral surgery didn't actually leave any open wounds, except for where the wisdom teeth were and that's why I got dry socket, which to be fair made me forget about the low level chronic pain I was experiencing pretty quickly. Anyway, the surgery left no open wounds that needed band aids, but the IV for the anesthetic did. It was a My Little Pony bandaid, and I'm convinced it was classic MLP although given that I was still heavily sedated at the time, I'm not sure you should believe me. But I was clearly paying attention, because I asked the friend who was taking care of me why I had a My Little Pony bandaid no less than five times.

*Tangent: I'm pretty sure I'd be less afraid of general anesthetic if doctors would just admit that it's to prevent you from from forming memories of terrible pain, not from feeling terrible pain. The fact that they won't admit makes me wildly inflate the percentages of people who wake up in surgery screaming.
pktechgirlbackup: (Default)
One thing I think is important to note is that the scientist who first cultured Henrietta Lack's cells, Guy-something-something*, never made a dime off of the cells or the techniques he invented- his was a life that took money in and gave science out. Given how prevalent the cells are and that people will give them away, it seems like the companies selling them are really selling convenience, not the cells themselves. Which doesn't make it okay to steal them and cell them, but is noticeably better than stealing them for the express purpose of profit.

I also find it telling that Dr. Guy's fondest wish was to do to himself what he'd done to Henrietta: he was devastated when his cancer was so inoperable they didn't remove any cells at all, preventing him from creating his own cell line. Told he was definitely going to die, he volunteered himself for a bunch of not-yet-tested on humans research, purely to help science.
Would science progress faster if all scientists were like Guy, and there were no profit motive? It depends. I think when a lot of people think about this, they're envisioning transforming everyone who does medical research for money into someone who does it for love. That's a great thought, but it's not what's going to happen. What happens is everyone who's in it for profit goes to a different industry and we end up with less medicine. The only thing worse than a cure you can't afford is a cure that doesn't exist. And in 30 years the expensive cure will be cheap(er), but the non-existent cure is still non-existent.

So to prove that taking the profit motive out of medical research would be net-beneficial, you have to show that the friction caused by profit motives is greater than the benefit. And there is friction: it leads people to keep research a secret, slowing new discoveries. Coordination costs for treatments that require patents from multiple owners can quickly dwarf the potential profits, leading to a loss for everyone as no one gets money or treatment. And of course, the suffering or death of people who couldn't afford the medicine.

What does profit motive get us in return? Well, we can assume pharmaceutical companies wouldn't pursue products without them. It's pretty clear that they overinvest in lifestyle drugs, relative to the social optimum, because they can charge whatever the hell they want for them, without fear of photogenic cancer patients shaming them into offering it at a lower price. Researching new drugs is an expensive and failure-prone process: pharmaceutical companies look like they have high profits, but what they really have is highly variable profits with the unprofitable companies going out of business. it seems- is- tragic to watch someone die when there is a cure they can't afford, but I prefer that to a world where everyone dies because there's no incentive to create a cure. Right now we strike a compromise, letting companies earn profit on drugs for a while (I believe it's 32 years, but the clock starts ticking when the substance is patented, not when it's approved for use, so the functional life of a drug is much shorter than that), and I think that's a good middle ground, although I wouldn't know where to begin figuring out what the correct length of time is.

Is there a way to keep the benefits of the profit motive without the cost? Maybe. But I have to discuss more of the financing first.

*I'm not being cute, his first or possibly last name really is Guy
pktechgirlbackup: (Default)
Warning: possible overgeneralization from my own experiences.

Background: from ages 12-21, I wanted to be a scientist. I left because it turns out science is a spectacularly crappy career, but I still feel some kinship with it.

Opening anecdote: One day in my sociobiology class, our lecturer described a particular experiment demonstrating that people are more friendly towards those who share their name, more so with last than with first, more so still if it's a rare name. The experiment was elegant, required a minimum of effort, and got the undergraduate experimenter published in Nature. For those who don't follow these things: that's roughly equivalent to throwing the winning pitch at the World Series at 17. My friend and I turned to each other and, in unison, mouthed the words "that bitch."

My point is, scientists are competitive. They care about truth and knowledge and expanding human horizons... but they also care that they're the one to do it. It's almost tautological, because while I'm sure there are many excellent scientists who don't care that much, they tend to get scooped. What's worse, there tends to be a particular moment for a particular discovery, and while 99.99999% of human beings are still incapable of finding it, there are still three or four other people with the knowledge, inclination, and equipment, and if any one of them beats you, you might as well be one of the 99.99999%. That was some of the lesson of Quicksilver*: you have all these brilliant minds coming at once and then they waste their time competing with each other and hiding results so the others can't steal them.

This feels like a pretty lonely limb, but I think that's why scientists are so quick to beat down Henrietta Lacks (the woman whose cancer cells went on to be the first and most productive line of cultured human cells). These men* gave their entire lives to something that has minimal financial reward (relative to what else someone with that level of intelligence could do) and is really only prestigious within a small subculture. They did it because they wanted to discover things, wanted to contribute, and wanted the respect of that subculture. They did at the expense of years and years of their lives. Then this woman comes along and contributes about as much to medical science as a nobel prize winner, and she didn't have to sacrifice a damn thing.***

I think researchers try to anonymize and deemphasize the source of their data- the human beings- because they don't want to share the credit. Human instinct is to give the biggest rewards to the person who made the most sacrifice, and giving part of their body feels like a bigger contribution than collating some data, even if the scientist provided the spark of insight and any old human could have donated blood. Knowing this, the scientists dehumanize the donors in an attempt to bring prestige/credit/ownership to themselves.

I'm basing this in part on my own feelings. While listening to the book there's a thread in me saying "why are we paying attention to her? She didn't do anything, she didn't choose anything, she was just in the right place at the right time to have something happen to her?" She has an interesting story, and it's pretty illustrative of a lot of things that were wrong with America at the time and are not as fixed as we like to think, but why is her story more interesting than any of the thousands of other poor black women who went to that same medical clinic? Why should she get remembered and they don't?

And the answer is... because. Because even without bringing metaphysics into it, it is good to cultivate an attitude of respect for people who contribute to things. It's good for the soul to know the web of connections you're living in, and bad to disregard people who made substantive contributions to it. Overruling that voice saying "but she contributed the actual living cells" comes at a real psychic cost.

Okay, that got dramatically less articulate at the end but I've still got a good 2/3 of the book left so maybe I'll figure out some more later.

*This is one reason I don't manage to keep my reading on theme. It's more fun coming up with connections between whichever books arrive at the library together

**The women scientists are likely to be even less happy with her, since they faced many more obstacles than the men.

***I mean, she did die at 30. But it wasn't intentional so it doesn't count.
pktechgirlbackup: (Default)
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.


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