[HN Gopher] Infected blood scandal: Children were used as 'guine...
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Infected blood scandal: Children were used as 'guinea pigs' in
clinical trials
Author : fidotron
Score : 110 points
Date : 2024-04-19 13:01 UTC (10 hours ago)
(HTM) web link (www.bbc.com)
(TXT) w3m dump (www.bbc.com)
| aredox wrote:
| The next time people ask "why so much paperwork, why so many
| regulations, why is it so complicated": this is why.
|
| Don't blame the regulators (legal (state) and paralegal (ethics
| committees)), blame those who abused their power.
| kbolino wrote:
| Observing the banality of evil in action, one could just as
| well surmise that the function of paperwork is to normalize
| grossly unethical practices and disconnect individuals from
| their moral agency.
| sidewndr46 wrote:
| Given that the perpetrator here was in fact the government,
| your argument carries no weight.
|
| Legal paperwork cannot prevent the government from choosing
| evil. In fact, it only serves to sanction it in most cases.
| ClumsyPilot wrote:
| > Legal paperwork cannot prevent the government from choosing
| evil
|
| This is deeply mistaken attitude - paperwork allows your to
| prosecute the person in the government that signed off on
| this decision. Without paperwork, you wouldn't be able to pin
| the decision on anyone
|
| And it is entirely normal to have the next government
| prosecute corrupt officials from the previous one
| cryptonector wrote:
| > And it is entirely normal to have the next government
| prosecute corrupt officials from the previous one
|
| Has this happened recently in the UK? Like, in the past 50
| years, or in the past 100 years?
| eviks wrote:
| All these regulations and paperwork didn't help prevent the
| crisis described in the article, so can we blame useless
| complications now?
| sp332 wrote:
| The ones in the article ended in the 80's.
| aredox wrote:
| Most of them didn't exist at the time.
| ajkjk wrote:
| You can still blame the solutions for their problems while
| acknowledging that they exist to solve another problem...
| toomuchtodo wrote:
| "We are inconvenienced because some humans are otherwise
| monsters."
| infamouscow wrote:
| This site heavily skews towards progressive ideology and has
| a lot of trouble with the idea of government being anything
| less than the solution everything. (Of course this only holds
| true when their favorite person is running it. As soon as the
| other guy runs it, the world is moments from ending.) You can
| see it first-hand by scrolling through my comment history.
| Rarely does anyone attempt to engage directly with any of the
| dissenting points, despite most of them being as old as _War
| and Peace_. The only tool available to them is perverting the
| voting system with downvote brigades and flagging.
|
| When alternative approaches are suggested, they're met with a
| mindless regurgitation of emotionally charged rhetoric rather
| than careful thought and reason. Their narcissism allows them
| dismiss anyone that even slightly disagrees with their
| approach. Those broadcasting alternative points of view are
| demonized and viciously attacked with the same oppressive
| tactics employed by the Sturmabteilung. The only saving grace
| here is ignoring reality is very costly. Eventually the
| payments are going to come due and the Schadenfreude is going
| to be very satisfying.
| alistairSH wrote:
| History shows we need regulation of medical trials.
|
| We can and should continually improve the system of
| regulation we have in place.
|
| We must not throw out the system completely, as that will
| likely result in a regression to previous behaviors and
| outcomes (which we've already determined were wrong).
| ekidd wrote:
| > _The next time people ask "why so much paperwork, why so many
| regulations, why is it so complicated": this is why._
|
| Yes, as the saying goes, regulations and safety rules are often
| written in blood.
|
| But that doesn't mean that all regulations are automatically
| good and proportionate. For example, many institutional review
| boards would have zero problem with researchers deliberately
| submitting security holes to the Linux kernel. Sure, you're
| experimenting on kernel maintainers without their consent, and
| sure, you might make hundreds of millions of people vulnerable.
| But it's not _technically_ "human research", so the IRB may
| sign off.
|
| https://www.zdnet.com/article/the-linux-foundations-demands-...
|
| Meanwhile, if you're a psychiatrist working in a hospital, and
| if you want to (say) compare the results of your standard
| screening questionare against the results of your standard
| patient intake interview, you might think this is easy.
| Patients will usually do both anyways, so how hard can it be to
| design an ethical process to compare the two? Well, it's harder
| than you might expect:
|
| https://slatestarcodex.com/2017/08/29/my-irb-nightmare/
|
| I agree that we need to have rules and regulations about many
| things. But we should still discuss whether specific
| regulations accomplish the intended goal, and how big a cost
| those regulations impose on society.
|
| It is perfectly possible for a large organization to design a
| software development process that makes it impossible to ever
| ship software. And similar pathologies often appear in any
| large organization, public or private. Designing _good_
| policies is hard but worth it.
| cryptonector wrote:
| Tuskegee.
|
| > Documents just released show the government in 1973 knew
| about the trials at Treloars and covered some costs.
|
| There's no perfect system. When the regulator, or the
| regulator's boss, is in on it, or when the industry has
| captured the regulator (which invariably happens), all that
| paperwork, all those regulations, all that complication -- they
| do nothing to protect the victims.
| malfist wrote:
| A solution doesn't have to be perfect to be a solution. It
| just has to be better than the alternative.
| cryptonector wrote:
| Regulations and regulators are awesome right up until they
| are captured, and then they can be worse than no solution,
| especially when the "solution" comes with immunity from
| civil suits.
| marcinzm wrote:
| And yet despite a century of ever increasing regulations
| mining and factory injury and death rates have somehow
| not gone back up to their 1900 levels as you seem to
| claim they should have.
| cryptonector wrote:
| > as you seem to claim they should have.
|
| Please don't do that. I said nothing of the sort. Plus
| what you did, besides being the "have you stopped beating
| your wife yet" sort of disgusting attack, is also
| whataboutism.
|
| The thing about workplace safety is that a) employers
| don't relish their employees getting hurt or dying on the
| job, b) employers don't benefit when their employees get
| hurt or die on the job, so even if there were no
| regulations employers would still not go back to 120
| years ago states of workplace safety, c) regulations here
| can help force employers to make better calculations
| regarding costs and benefits of _improving_ workplace
| safety as it 's on the improvement side that the costs
| mostly lie. So you see, there is not much benefit to the
| industry in capturing the regulator for the purpose of
| undoing workplace safety regulations.
| marcosdumay wrote:
| Regulations that don't solve a problem won't solve a
| problem.
|
| Lots and lots of regulations are ok to exist only as long
| as they do something useful. If they are useless, piling
| more useless ones isn't better than the alternative.
|
| On the real world, we tend to have plenty of the useless
| ones, and only a few of the very useful ones. When someone
| complain about the first set, people are quick to throw the
| second set at them like if it addressed the problem.
| alex_lav wrote:
| Why must I choose which offensive and inadequate system to be
| outraged at?
| vlod wrote:
| You know paperwork gets "lost" right? I know someone which was
| allergic to something and got prescribed that something by
| their general doctor (which had those records).
|
| That person died and the all medical records (from that doctor)
| somehow went missing. fyi: This was during the 1980's in the
| UK.
| jcutrell wrote:
| How isn't this categorized as manslaughter?
| Steven420 wrote:
| I guess because the criminals are dead?
| ClumsyPilot wrote:
| Funny, but not legally relevant
| adamnemecek wrote:
| I wonder how the doctor justified m this to themselves.
| sidewndr46 wrote:
| Your question assumes the thought ever crossed their mind. It
| may have not.
| soco wrote:
| How do software developers justify creation of weapons
| intelligence? Or of computer viruses? Or of targeted
| surveillance?
| n4r9 wrote:
| > targeted surveillance
|
| This one is really interesting. I thought a lot about it
| after the revelations that Uber were targeting law
| enforcement based on user behaviour, and refusing to offer
| them rides in areas where they were breaking regulations.
|
| Of course, one option is that the developers were fully aware
| of what they were doing, and were perhaps motivated by money
| or some sort of libertarian ideology.
|
| The other option - more compelling in my mind - is that this
| functionality was carefully broken down into innocuous pieces
| and distributed on a need-to-know basis. One feature which
| groups users in configurable ways based on their history.
| Another feature that allows on-the-fly ride prioritisation
| based on user groups. Another feature that localises
| prioritisation to geographic areas. The upshot is that only
| some managers knew what the full potential of the
| functionality was.
| Traubenfuchs wrote:
| Why would you NOT help the company you are working for
| thrive with a task like that? Assuming you don't do
| anything that would be a personal legal risk. It would be
| masochistic.
| n4r9 wrote:
| If you knew that your employer was knowingly and
| deliberately flouting national or state regulations, and
| they asked you to put surveillance tech in place to
| prevent law enforcement from finding out, you would
| happily comply if there was no personal risk?
| Traubenfuchs wrote:
| > put surveillance tech in place to prevent law
| enforcement from finding out
|
| That idea is so exciting to me, I'd volunteer to be part
| of that project, ESPECIALLY
|
| > if there was no personal risk
| n4r9 wrote:
| Interesting. Can you give any examples - short of
| physically hurting people - of tasks you'd refuse to do
| on ethical grounds?
| Traubenfuchs wrote:
| I can't imagine doing (clearly harmful) medical
| experiments without consent.
|
| And nothing that would harm a group I belong to or
| support.
|
| I generally wouldn't find pleasure in working on things
| that make people I have nothing against more miserable.
|
| It's a very broad question. Really depends on a case by
| case basis.
|
| I think I just really don't care about ethics at all,
| just my personal feelings.
| Traubenfuchs wrote:
| It pays well and gives you the certainty of your code having
| some heavy impact across borders, often against the kind of
| people you don't like as well.
| ericmcer wrote:
| Developers can't physically see the people that will be
| effected and they are usually just following orders from
| managers. It is shitty but it is way easier to know a bomb
| you were ordered to make is blowing people up on the other
| side of the world than it is to shoot someone directly in
| front of you.
| DoreenMichele wrote:
| Some people don't have a moral compass. "Oh, look! Interesting
| opportunity to entertain myself in the name of furthering
| medicine while power tripping because I have so much more
| schooling than my idiot patients!"
| andai wrote:
| I think that in the belief system of utilitarianism, if one
| believes an action will save more lives than it costs, then it
| is justified? (Not sure if that's what went on in their heads
| though.) If the calculus leans heavily in one direction, then
| arguably one is killing people by not taking that action (by
| preventing their lives from being saved).
|
| (In my opinion this article represents a pretty compelling
| counterargument to that philosophy...)
| drdeca wrote:
| Well, if the action produces "more utility". Lives is one
| measure, but, while "lives saved - lives lost" will probably
| play a role in most ways of defining "utility", I don't think
| most utilitarians would have it by itself as what they
| consider to be "utility"?
|
| (I'm not a utilitarian, or even a consequentialist, I just
| want to be fair.)
|
| A utilitarian may also consider things like, "likely impacts
| on public trust in medicine" and what effects that is likely
| to cause, when considering how an action might influence
| "total utility".
| ericmcer wrote:
| Is this just a few doctors experimenting and manufacturing this
| stuff on their own? Is there a pharmaceutical company behind
| this? The article doesn't mention anything other than "Factor
| VIII".
| cryptonector wrote:
| > Documents just released show the government in 1973 knew
| about the trials at Treloars and covered some costs.
| JeanMarcS wrote:
| And that's why we end up with antivax, and anti science
| conspiracies.
|
| This is food for their argumentation, and with that kind of
| stuff, it's hard to explain that science should prevail.
|
| This is sad.
| basil-rash wrote:
| Plenty of such cases: https://www.euronews.com/2023/06/08/how-
| did-sweden-sterilise...
| loceng wrote:
| Do you know of how Pfizer designed the COVID-19 shot clinical
| trial, and how they designed the app to collection symptom
| reports from the clinical reserch participants?
|
| Do you know of Maddie de Garay's story?
| ClumsyPilot wrote:
| I don't agree with this whole attitude, the idea that plebs
| should not question the medical experts because they are
| unqualified is how you get corruption, fraud and abuse.
|
| It is right to hold people accountable
| cryptonector wrote:
| When government perpetrates anti-science... Our governments
| have done awful things in the name of science, including
| eugenics and forcible sterilizations.
| ericmcer wrote:
| Some anti-vax people take it too far, but calling anyone who
| asks questions a crazy anti-vaxxer doesn't make sense.
|
| How can you simultaneously know that pharmaceutical
| corporations are corrupt and choose profits over health, but
| also think it is crazy to question the vaccines they produce.
| Those are two contradictory ideas, but the vast majority of
| people would agree that both are true. It seems like we have
| been manipulated.
| loceng wrote:
| I'm still surprised the scandal of how Pfizer's clinical trial
| for COVID-19 was designed isn't widely known - most specifically
| with how the app to collect clinical trial participant reports
| was designed:
|
| 1) there was no free-form writing field to mark down symptoms
| that weren't on an existing list of pre-approved or allowed-to-
| be-reported symptoms, and
|
| 2) the clinical research director for the ignored participants
| who attempted to contact them to report symptoms not reportable
| in the app.
|
| Source: a teenager and her mother who were participants in the
| clinical trial, here in their ~10 minutes of testimony -
| https://www.youtube.com/watch?v=L2GKPYzL_JQ
| jtbayly wrote:
| Source?
| loceng wrote:
| It's all in the Maddie de Garay ~10 minute testimony here:
| https://www.youtube.com/watch?v=L2GKPYzL_JQ
| bondarchuk wrote:
| Just a heads up, you're gonna have to give a source that's
| not a youtube video if you want to be taken seriously.
| loceng wrote:
| Who would you accept as a credible source? Will it be
| from any of the people complicit in what's being
| testified to in an official government senate hearing?
| cryptonector wrote:
| > Just a heads up, you're gonna have to give a source
| that's not a youtube video if you want to be taken
| seriously.
|
| Are you kidding? Sure there's lots of garbage at YT, but
| so what, you can often tell if something is hot garbage
| or real.
|
| Anyways, this is testimony taken by Senator Ron Johnson.
| It's trivial for you to verify that Senator Johnson is
| the one running that meeting, and that this is video of
| that meeting, and you can follow up with his office if
| you have any questions. You would know this if you merely
| loaded the video, even if you didn't watch more than 5
| seconds of it. You asked for a source, and you got it,
| and it is a reputable source even if it is a YouTube
| video.
| hollerith wrote:
| No, he is not.
| logicchains wrote:
| Here's a source on the trial being poorly run:
| https://www.bmj.com/content/375/bmj.n2635 .
| sunshine_reggae wrote:
| I find it interesting to see how massive crimes like these take
| approximately 50 years to be uncovered. And how little impact
| such an uncovering ends up having.
| ClumsyPilot wrote:
| It is surprisingly common, we are much more similar to
| Developing nations than we would like to believe
| fabian2k wrote:
| I'm rather confused by the description of events here. The
| article focuses on the lack of consent, which of course is a very
| important topic. But the main issue to me here seems to be the
| use of blood products that were known to be often contaminated.
|
| If it was known that those products had a high chance to be
| contaminated, no amount of consent would make any of this
| ethical. The only ethical way to use them would be if there was
| no alternative available and the potential infection with
| Hepatitis C or other viruses would be less dangerous than no
| treatment at all.
|
| Consent is a necessary requirement for an ethical clinical trial.
| But it is not sufficient by far, the risks and benefit of the
| trial need to be proportionate for the patients.
| DoreenMichele wrote:
| My impression is that they were trying to determine if the heat
| treated products were actually safe.
|
| But, you know, that should have happened before they were
| approved as products.
|
| I'm horrified and don't know what the hell to say. Humans have
| a long history of gruesome medical experimentation and I'm just
| not in a good space for addressing this well.
| lakhim wrote:
| Yes, that's the part here - you die without factor VIII. Its
| why severe hemophiliacs almost always died before factor VIII
| because available, and why almost 100% of them had HIV and hepC
| in the window between those viruses entering the blood supply
| and 100% testing / heat treatment (which is darkly funny
| because one of the trials involved was about heat treatment,
| seems to work for HIV but not for hepC).
|
| From what I can tell, the issue is twofold: Informed consent,
| of which there was very little, but that's not exactly rare
| until recently, and running the trials on "marginal cases" -
| hemophilia comes in differing severity, and given the risks of
| using known contaminated factor VIII using it unless necessary
| probably wasn't the best idea.
| trebligdivad wrote:
| One of the campaigners was saying they had a document from the
| 50's recommending that blood products be made from a small
| number of people in each batch, so that there was a decent
| chance that most batches were fine, and in the case of this
| trial each batch was made from vast numbers of people, so were
| bound to have something in.
| vlod wrote:
| I'm pretty shocked with this. I grew up in the UK during this
| time and the trust in doctors was absolute. We were all plebs and
| were told what to do, no questions. We all complied. Yes sir, no
| sir, three bags full sir.
|
| As someone who previously trusted "people of science" and the
| scientific method, I've come to realize that my assumptions were
| misplaced. The shenanigans of the COVID period, government
| censorship etc.
|
| I find it exceeding hard to trust _anyone_ is competent in
| anything. The overpriced general contractor that take shortcuts
| and have to pay someone else to redo work, medical people that
| prescribe medication /procedures based on a script (e.g.
| prescriptions of Ozempic).
|
| I tend to go down the path of treating people respectfully and
| then quite rapidly, it goes down to they just start saying stuff
| that doesn't make sense (logically) and just want me to accept
| it.
|
| This sounds ridiculous but FFS. My tech/analytical, data-driven
| approach to solve problems seems to be a better model that anyone
| I deal with.
|
| Hopefully it's not Occam's razor that AITA.
| cryptonector wrote:
| The UK used to be quite extreme in forcing people to get the
| smallpox/cowpox "vaccine" in the 19th century. Compliance rates
| were quite high in the 1840s, but by the 1880s they were very
| low because people started to figure out that there were
| serious issues with that vaccine. Similar things happened in
| the Spanish Flu period as in the covid period, including anti-
| vaccine protests in Ottawa and anti-masking protests too, but
| by the mid-1920s everyone had forgotten completely all about
| that. I wonder how soon we will forget all about covid.
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