17 comments

  • fabian2k 13 days ago
    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.

    • lakhim 13 days ago
      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 13 days ago
      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.
    • metalspoon 12 days ago
      So far, my understanding is that, in some of all these horrible inhumane activities, there were what THEY thought were potential cures.

      If correct, these satanists might argue those were of good intention.

      Informed consent was broken, so I guess it's a lower hanging fruit for bringing justice. That said, I don't know if informed consent had been established by 70-80s.

      • dessimus 12 days ago
        >If correct, these satanists might argue those were of good intention.

        You really need to bone up on the acts of Christians, if you think only satanists would irreparably harm others, including children.

    • DoreenMichele 13 days ago
      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.

    • aaron695 13 days ago
      [dead]
  • aredox 13 days ago
    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.

    • cryptonector 13 days ago
      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 13 days ago
        A solution doesn't have to be perfect to be a solution. It just has to be better than the alternative.
        • marcosdumay 13 days ago
          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.

        • cryptonector 13 days ago
          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 13 days ago
            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 13 days ago
              > 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.

    • ajkjk 13 days ago
      You can still blame the solutions for their problems while acknowledging that they exist to solve another problem...
      • alistairSH 13 days ago
        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).

      • toomuchtodo 13 days ago
        “We are inconvenienced because some humans are otherwise monsters.”
        • salawat 12 days ago
          Otherwise stated as

          >This is why we can't have nice things.

      • infamouscow 13 days ago
        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.

    • kbolino 13 days ago
      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 13 days ago
      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 13 days ago
        > 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 13 days ago
          > 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 13 days ago
      All these regulations and paperwork didn't help prevent the crisis described in the article, so can we blame useless complications now?
      • sp332 13 days ago
        The ones in the article ended in the 80's.
      • aredox 13 days ago
        Most of them didn't exist at the time.
    • vlod 12 days ago
      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.

    • ekidd 13 days ago
      > 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.

    • alex_lav 13 days ago
      Why must I choose which offensive and inadequate system to be outraged at?
  • sunshine_reggae 13 days ago
    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 13 days ago
      It is surprisingly common, we are much more similar to Developing nations than we would like to believe
  • jcutrell 13 days ago
    How isn't this categorized as manslaughter?
    • Steven420 13 days ago
      I guess because the criminals are dead?
      • ClumsyPilot 13 days ago
        Funny, but not legally relevant
        • ImJamal 12 days ago
          It is legally relevant since they can't charge a dead person with a crime?
  • ericmcer 13 days ago
    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 13 days ago
      > Documents just released show the government in 1973 knew about the trials at Treloars and covered some costs.
  • adamnemecek 13 days ago
    I wonder how the doctor justified m this to themselves.
    • soco 13 days ago
      How do software developers justify creation of weapons intelligence? Or of computer viruses? Or of targeted surveillance?
      • n4r9 13 days ago
        > 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 13 days ago
          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 13 days ago
            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 13 days ago
              > 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 13 days ago
                Interesting. Can you give any examples - short of physically hurting people - of tasks you'd refuse to do on ethical grounds?
                • Traubenfuchs 12 days ago
                  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.

      • ericmcer 13 days ago
        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.
      • PeterisP 12 days ago
        There's a sufficient number of people personally doing targeted surveillance or pulling the trigger on weapons - and I'd assume that the barrier for building the tools for something is even lower than doing that yourself.
      • Traubenfuchs 13 days ago
        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.
    • DoreenMichele 13 days ago
      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!"
    • sidewndr46 13 days ago
      Your question assumes the thought ever crossed their mind. It may have not.
    • andai 13 days ago
      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 13 days ago
        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".

  • Voultapher 12 days ago
    I think using guinea pigs as guinea pigs is ethically wrong. We sure as heck don't ask them for consent.
  • Borrible 12 days ago
    You probably know that children, especially children from low socio-economic backgrounds, were considered expendable in a lot of societies for the longest times?

    Admittedly, it took a few decades after the Nuremberg trials before the superficial realization that you can't do everything that pleases the researcher's heart took hold.

    "The ancient Persian kings and the Egyptian pharaohs are said to have treated criminals as expendable experimental material, much as a modern laboratory researcher might order a supply of rats or rabbits. The practice was apparently still in vogue in eighteenth-century England, since Caroline, Princess of Wales, "begged the lives" of six condemned criminals for experimental smallpox vaccination before submitting her own children to the procedure. (She also procured, for further trial, "half a dozen of the charity children belonging to St. James' parish/')"

    Louis Lasagna, Special Subjects in Human Experimentation, p.449, Daedalus Vol. 98, No. 2, Spring, 1969, Ethical Aspects of Experimentation with Human Subjects

    https://www.jstor.org/stable/20023886?seq=1

  • vlod 12 days ago
    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 12 days ago
      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.
  • JeanMarcS 13 days ago
    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 13 days ago
    • cryptonector 13 days ago
      When government perpetrates anti-science... Our governments have done awful things in the name of science, including eugenics and forcible sterilizations.
      • ImJamal 12 days ago
        Eugenics and forced sterilization aren't anti-science. It is quite the opposite in fact. They have a strong basis in science, specifically genetics and psychology. If you think somebody has undesirable genes or will cause a kid to have bad upbringing then stopping them from reproducing would lower the amount of the traits you want to see eliminated.

        It seems perfectly pro-science to me. It is just an abuse of science. The anti science take would be to deny parents pass on genes and as such eugenics / forced sterilization wouldn't stop bad genes.

        • cryptonector 12 days ago
          > It is just an abuse of science.

          > > Our governments have done awful things in the name of science, including eugenics and forcible sterilizations.

          "...in the name of science" -- it hardly matters whether it's proper science or anti-/un-scientific nonsense when the result is deeply immoral. The fact is that both science and "science" have been and continue to be used to justify horrible acts. We have to stop that.

    • ericmcer 13 days ago
      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 13 days ago
      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 13 days ago
      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

  • loceng 13 days ago
    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 13 days ago
      Source?
      • logicchains 13 days ago
        Here's a source on the trial being poorly run: https://www.bmj.com/content/375/bmj.n2635 .
        • jtbayly 10 days ago
          Thanks! I haven't heard anything about this before.
      • loceng 13 days ago
        It's all in the Maddie de Garay ~10 minute testimony here: https://www.youtube.com/watch?v=L2GKPYzL_JQ
        • jtbayly 10 days ago
          Thanks! Combined with the other link to the BMJ article, it's pretty concerning.
        • bondarchuk 13 days ago
          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 13 days ago
            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 12 days ago
            > 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 12 days ago
            No, he is not.
    • Steven420 13 days ago
      [flagged]
  • icjwntbdo 13 days ago
    [flagged]
  • jasonvorhe 13 days ago
    [flagged]
    • ensignavenger 13 days ago
      From what I have observed,.it is folks who fabricate risks that are labeled as nut jobs, not those who talk plainly about the actual risks.
    • DoreenMichele 13 days ago
      You can be a "nutjob" for a long list of really stupid reasons when it comes to foolishly talking about health topics and personal choice on the world wide web.
      • basil-rash 13 days ago
        What is “foolish” discussion of a personal health topic? The main arguments I saw were that long term studies did not exist (tautologically), and that side effect reports (especially those from women) were swept under the bureaucratic rug. Which is also true.
        • DoreenMichele 13 days ago
          Discussing health topics at all online is rife with problems rooted in bad faith social stuff and poor rubrics.

          And not being fixed.

          • sunshine_reggae 13 days ago
            Exactly. Way too much influence by financially extremely powerful industry interests. Simply far too much money to lose.
            • mschuster91 13 days ago
              It's undeniable that there was a lot of lobbying and likely also corruption going on behind the scenes regarding COVID - a lot of people got rich hoarding or brokering masks, toilet paper, COVID tests or vaccines after all.

              At the same time, it is also undeniable that COVID killed millions of people worldwide, gave tens to hundreds of millions of people Long COVID (depending on how exactly one defines the "long" term) and caused an immense loss of wealth due to containment measures (that were justified by the death count). Vaccines, in particular the mRNA vaccines, saved our world - were it not for them, the losses would have been orders of magnitude worse than the losses due to corruption and mismanagement.

              • basil-rash 13 days ago
                That can all be true and it still be the case that very many people were forced to be vaccinated unnecessarily, and suffered more damage from that unnecessary vaccination than they would have otherwise. Healthy youth, for instance, should not have been forced to inject themselves with these experiments.
                • mschuster91 13 days ago
                  > and suffered more damage from that unnecessary vaccination than they would have otherwise.

                  Schools were a primary vector for disease transmission into their families, and that even way before Covid. Just look how many of your colleagues with children all fall sick after longer school holidays. (Side note, we definitely need investment into RSV and more influenza variant vaccines!)

                  Additionally, we could invest money into our schools so that they have decent air filtration, or even ventilation. Think back to your school time and remember how often you had to spend time in classrooms with barely any oxygen left ffs, or how many toilets had working water to wash your hands or towels to dry them. Preventative measures against Covid and other illnesses have a lot of other positive side effects.

                  > Healthy youth, for instance, should not have been forced to inject themselves with these experiments.

                  There was more than enough evidence that the vaccines were safe from adults and from populations that were early-on with vaccine adoption (especially Israel - there aren't that many Jews left on the world and they are a lot more proactive when it comes to keeping them alive).

                  Besides, even young and fit people can have devastating impact from Covid. Quite a few athletes were permanently out of the game after they caught Covid, and youth at risk (e.g. from obesity which is very widespread among young people these days) had it even worse. I know two people who were out of work for months.

          • basil-rash 13 days ago
            “Fixed” here meaning?
            • DoreenMichele 13 days ago
              Meaning addressing the social aspect that makes such discussions so bad and problematic.
  • cs702 13 days ago
    [flagged]
    • DoreenMichele 13 days ago
      The article says a lot of the perpetrators are already dead, presumably of old age/natural causes.

      I don't know how to remedy it.

    • ClumsyPilot 13 days ago
      I was also shocked, and doubly shocked that no punishment was faced by those responsible. This is the kind of stuff I expect to happen in Russia
  • cies 13 days ago
    [flagged]