[HN Gopher] Brain biopsies on 'vulnerable' patients at Mt Sinai ...
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       Brain biopsies on 'vulnerable' patients at Mt Sinai set off alarm
       bells at FDA
        
       Author : chapulin
       Score  : 77 points
       Date   : 2024-05-15 15:48 UTC (7 hours ago)
        
 (HTM) web link (www.statnews.com)
 (TXT) w3m dump (www.statnews.com)
        
       | coffeebeqn wrote:
       | Sounds like a minor lobotomy
        
         | escapecharacter wrote:
         | as a treat
        
         | thiagoeh wrote:
         | not my area of experise, but I wouldn't call 2 pieces of up to
         | 1 cubic centimeter "minor". Looks significant to me
        
           | jonnycomputer wrote:
           | Apparently the IRB approval was for up to 1 cubic cm, but
           | according to Mt. Sinai, the average actually obtained is
           | 0.04cc, far less.
        
             | GrantMoyer wrote:
             | Note that 0.04 cm3 is the volume of a cube with side length
             | [?] 0.34 cm, so in the way we usually think of scale, the
             | average was about  1/3  of the approved maximum.
        
               | jonnycomputer wrote:
               | Yes, but its about 4% of the total maximum volume, not a
               | third. Its just that the "sides" of the cube are about a
               | third of the maximum. Like, if it had a constant density,
               | it'd be 4% of the mass of the maximum, not a third.
        
           | ars wrote:
           | According to the article the amount of brain tissue lost is
           | the same either way.
           | 
           | With this study they cut it out, remove, and study it,
           | without the study they burn it away.
           | 
           | If that's really the case, then this seems like a non story
           | to me.
        
       | hammock wrote:
       | The researchers claimed the biopsies were low-risk, but the FDA
       | found this was a "false justification" to obtain patient consent.
       | 
       | Super important that doctors discuss the risks, even the rare
       | ones, when severe, with patients before doing a procedure/jabbing
       | them with something/putting them on a pharmaceutical
        
         | gumby wrote:
         | It's hard for people to evaluate risk. This morning my gf said
         | she was "living in dread" of an upcoming procedure: 80% chance
         | of success, almost 20% chance of doing nothing, <1% chance of
         | things going very wrong. She's in a lot of pain so elected to
         | do it. Her worry is affecting her sleep.
         | 
         | This is despite the fact that her PhD was extremely statistics-
         | heavy, and she still does statistical analysis in her job, not
         | every day, but more than once a week. Admittedly she's not a
         | medical statistician, but I don't think that should matter.
        
           | kevinventullo wrote:
           | I mean how much < 1%? If it's a 1 in 200 chance of things go
           | south, I can sympathize with losing sleep over it. 1 in 100k,
           | maybe not so much.
        
           | uniqueuid wrote:
           | A big part of the problem is that as patients, we observe
           | single discrete outcomes.
           | 
           | For doctors an aggregate 1% chance is low, but the
           | realization of the outcome in a single person is not a
           | percentage, its binary bad side effects or not.
           | 
           | Admittedly, doctors could usually do better in communicating
           | risks (e.g. see the famous example of 1/3 risk of impotence,
           | which patients interpret either as 1 out of 3 people, 1 out
           | of 3 times having sex, or 1/3 of the time of sex).
        
             | JohnFen wrote:
             | > For doctors an aggregate 1% chance is low
             | 
             | Anybody who has played much D&D knows that a 1% chance
             | isn't as low as it sounds.
        
               | wlesieutre wrote:
               | I was thinking XCOM. Rely on a 90% chance to hit a couple
               | of times and you'll lose the mission.
        
             | mistrial9 wrote:
             | unfortunately I agree that 1% is non-negligible.. I met a
             | man who had Lasik eye procedure around 2000 and it went
             | badly.. prism vision for life.
        
             | itronitron wrote:
             | Many years ago, while developing data analysis software, my
             | employer was able to receive a 'sample' dataset of patient
             | outcomes from a prospective client. There were many
             | fatalities as the patient outcome of elective surgeries.
        
             | rangerelf wrote:
             | It doesn't matter what the probabilities are when the
             | stakes are high:
             | 
             | - 1% chance of living the rest of your life in mind numbing
             | pain
             | 
             | - 50% chance of having to remove that pesky wisdom tooth
             | 
             | (numbers pulled out of thin air)
             | 
             | In the first case, I'd really really think about it hard
             | and deep, and question myself if it's really that
             | necessary; in the second, meh, worst case I lose a wisdom
             | tooth.
        
           | psvv wrote:
           | It's not just the risk percent but also the scale of "very
           | wrong" that matters.
           | 
           | Sounds like she is proceeding with the procedure despite this
           | fear, which seems to indicate to me a fairly astute
           | assessment of the risk.
           | 
           | However, I agree people are generally not very good at
           | evaluating risk.
        
           | ceejayoz wrote:
           | A one-in-five chance of the pain not getting any better is
           | frequently worthy of dread on its own.
        
           | christophilus wrote:
           | Well, how much less than 1% are we talking? I'd be worried
           | about something really bad that had a 1 in 200 chance of
           | happening, for example. I would be worried about playing a
           | single round of Russian Roulette with a 200-chamber revolver.
        
           | binary132 wrote:
           | There's a huge difference between rationally evaluating risk
           | and how we feel about risk. Just because I rationally
           | understand and choose a certain set of risks, doesn't mean I
           | can necessarily make myself feel good or even okay about
           | them. Even a small or inconsequential amount of risk can be
           | really scary if the potential bad outcome is really bad.
        
           | colechristensen wrote:
           | Yeah humans are bad at exponentials and volumes. What's the
           | difference between one in a thousand or a million or a
           | billion? It's quite hard to treat those chances differently.
        
       | jonnycomputer wrote:
       | I hate to ask this, but anyone have a non-paywalled link?
        
         | mikestew wrote:
         | No offense intended, but you've been hanging out on HN for
         | seven years and haven't figured out archive.ph? Where did you
         | think those links come from? :-)
         | 
         | https://archive.ph/1bwiw
        
           | dodox wrote:
           | Archive.ph has the paywalled version.
        
           | onemoresoop wrote:
           | This archived content cuts off exactly where the paywalled
           | article does.
        
           | advisedwang wrote:
           | No offense intended, but did you look at the archive link you
           | posted? It has the same paywall.
        
       | mistercheph wrote:
       | We will look on the notions and practices of medical care in the
       | present with as much mirth as the bloodletters, plague doctors,
       | and humor examiners of the past have provided us.
        
         | pakitan wrote:
         | Yes, and future spaceships will travel 100x times the speed of
         | light.
        
           | snapcaster wrote:
           | You really think we're up against fundamental limits of
           | medicine? I'm struggling to understand your meaning here
        
             | pakitan wrote:
             | I'm just making fun of the certainty with which the poster
             | assumes that just because we had humongous progress in all
             | areas of knowledge for the last 100 years, it's somehow
             | guaranteed that the progress will continue at the same
             | rate. Fundamental limits or not, we've already picked the
             | lowest hanging fruit and further progress is painfully
             | incremental, slow and expensive and Star Trek-like devices
             | seem extremely unlikely.
        
               | sfink wrote:
               | I think you're reading it backwards. If you look closely
               | at how medicine is done today, you will see that there
               | are many areas where it is wildly divorced from reality.
               | So, the point was not "we'll be vastly better soon", it's
               | more "we're in a bad place now".
               | 
               | The current most wildly successful, heavily prescribed
               | medicines today are statins. They help 1 in 104 people in
               | terms of preventing heart attacks, 1 in 154 people in
               | terms of preventing stroke. (Those are people without
               | known heart disease, but they are the vast majority of
               | people taking statins.) They harm 1 in 10 by causing
               | muscle damage, 1 in 50 by causing diabetes. [1] That's
               | the _success_ story. (Sure, you can debate the details.
               | Do they really _cause_ diabetes? Unclear. Do they help
               | anyone, ever, to not die sooner? Unclear.)
               | 
               | It seems like the main reason they're considered so
               | successful is that they do indeed lower an intermediate
               | metric, namely blood cholesterol level. I am sure that
               | bloodletting was successful at removing blood, and if you
               | have an infection, you could even say at removing bad
               | blood.
               | 
               | And yes, I'm cherrypicking my definition of success.
               | Modern medicine can indeed dramatically improve outcomes
               | for a large set of problems (eg cancer). But doctors were
               | successfully setting bones back in the bloodletting days,
               | too.
               | 
               | [1] https://thennt.com/nnt/statins-for-heart-disease-
               | prevention-...
        
               | nonameiguess wrote:
               | There is a serious problem with that site's analysis. The
               | meta cited on statin death prevention covered an average
               | trial length of 3.74 years per person. That means they
               | can give you, at best, your 3-4 year probability of
               | having a fatal heart attack. For most age cohorts, that
               | probability is very near 0 no matter what you do, so no
               | intervention whatsoever can prevent cardiac event death
               | by this metric. But this metric isn't what people care
               | about. They're not trying to reduce the risk of having a
               | heart attack in the next few years. They're trying to
               | reduce the risk of _ever_ having a heart attack.
               | 
               | Note this is exactly why we actually use the studies of
               | people with prior cardiovascular disease that this meta
               | excludes. Those people are sufficiently likely to
               | actually have another heart attack within the time
               | horizon of the study that you can get useful data!
               | 
               | The other option is to only conduct 60 year trials. It
               | should be obvious why that isn't a viable option.
        
         | flybrand wrote:
         | There's a saying I've heard, can't fully recall, "why go to the
         | doctor - I either get a cut, an injection, or nothing."
        
       | felipellrocha wrote:
       | H... House...? Is that you?
        
       | jonnycomputer wrote:
       | Without being able to see through the paywall, its hard to know
       | whether the "false justification" was a technicality or something
       | serious and nefarious.
        
         | derbOac wrote:
         | The latter.
        
       | moffkalast wrote:
       | > at a Mount Sinai medical facility in midtown Manhattan
       | 
       | Not the actual mountain mind you, there you'd probably be
       | diagnosed with an acute case of Shahed drone instead.
        
         | selimthegrim wrote:
         | In case you haven't noticed Egypt and Iran haven't been best
         | buddies since approximately the Fatimid dynasty (and Iran
         | wasn't even Shiite then). You have to go back even further to
         | find the last time Persia ruled Egypt
        
           | moffkalast wrote:
           | I was thinking more about stray hits flying over in Israel's
           | general direction since it's close by, but you do make a good
           | point. They could just shoot at Egypt directly.
        
       | mkmk wrote:
       | Since this is so effectively paywalled, it's probably worthwhile
       | to note that much of the story explained here in this tweet
       | thread:
       | https://twitter.com/KatherineEban/status/1785740414420422819
        
         | justinclift wrote:
         | That just gives an error when I try to visit it:
         | Something went wrong, but don't fret -- let's give it another
         | shot.
         | 
         | Repeatedly, never loading the expected content.
        
           | itscrush wrote:
           | https://threadreaderapp.com/thread/1785740414420422819.html
           | appeared to work for me
        
           | mewse-hn wrote:
           | I don't have a twitter account but was able to read the
           | thread here:
           | 
           | https://threadreaderapp.com/thread/1785740414420422819.html
        
           | ineedaj0b wrote:
           | works for me!
        
       | elzbardico wrote:
       | Paywalled article not accessible through archive.
        
       | tapper wrote:
       | I hate paywalls!
        
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       (page generated 2024-05-15 23:01 UTC)