[HN Gopher] Covid-19 vaccines and treatments: we must have raw d...
___________________________________________________________________
Covid-19 vaccines and treatments: we must have raw data, now
Author : steelstraw
Score : 120 points
Date : 2022-01-20 21:11 UTC (1 hours ago)
(HTM) web link (www.bmj.com)
(TXT) w3m dump (www.bmj.com)
| bryanlarsen wrote:
| Who's responsible when it turns out that the anonymization of
| highly confidential patient data in the raw data is flawed, as it
| inevitably is?
| someguydave wrote:
| There is a tradeoff between an individual's absolute right to
| "health secrecy" and advancing treatments. I think the pendulum
| has swung too far towards privacy.
| nradov wrote:
| As long as they follow the official HHS guidance on de-
| identification then it should be fine.
|
| https://www.hhs.gov/hipaa/for-professionals/privacy/special-...
| uvesten wrote:
| It seems there has to be some amendments to rules about releasing
| raw, anonymized trial data when the state is sponsoring
| development of the drug. Also, how can Pfizer claim that their
| "study" ends in 2023? Several hundred million people have already
| received their vaccine, unaware that it's part of a study where
| the clinical data is not even accessible to their doctors...
| ceejayoz wrote:
| > Also, how can Pfizer claim that their "study" ends in 2023?
|
| Long-term studies are common. We still study Tylenol _to this
| day_ , for example, to monitor for things like "does it
| interact with newly approved drugs".
| foolyvaxxed wrote:
| dragonwriter wrote:
| > Also, how can Pfizer claim that their "study" ends in 2023?
|
| Because it does.
| https://beta.clinicaltrials.gov/study/NCT04848584
|
| > Several hundred million people have already received their
| vaccine, unaware that it's part of a study
|
| Because it's not. Use under the EUA and subsequent approval is
| separate from and in parallel with continuing studies.
| fsociety999 wrote:
| > Because it's not
|
| That is misleading at best. It absolutely is part of an
| ongoing clinical trial regardless us if it is authorized for
| emergency use.
|
| How many people who were given the vaccine were told that it
| is part of an ongoing clinical trial, authorized for
| emergency use, and the data from the trial won't be available
| for years? I suspect a very small percent.
| mike_d wrote:
| Trial participants sign agreements to be part of the trial
| and usually receive compensation or free medical treatment
| in exchange for being part of the trial and continued
| health monitoring. This is a hard rule from the FDA, and
| failure to do so is subject to criminal liability.
|
| Individuals receiving drug under an EUA are not part of a
| clinical trial, regardless of what you think of the drug.
| ceejayoz wrote:
| My kids were in a clinical trial on bilirubin lights, a
| technology around since the 1950s. Would it be fair to
| imply the lights are untested as a result?
| aaron695 wrote:
| hanselot wrote:
| daenz wrote:
| >The BMJ supports vaccination policies based on sound evidence.
| As the global vaccine rollout continues, it cannot be justifiable
| or in the best interests of patients and the public that we are
| left to just trust "in the system," with the distant hope that
| the underlying data may become available for independent scrutiny
| at some point in the future. The same applies to treatments for
| covid-19. Transparency is the key to building trust and an
| important route to answering people's legitimate questions about
| the efficacy and safety of vaccines and treatments and the
| clinical and public health policies established for their use.
|
| Serious question: if the raw data could potentially undermine
| public trust in the US government, can it be classified as a
| matter of national security?
| YXNjaGVyZWdlbgo wrote:
| Everythihng can be declared a matter of national security...
| wyldfire wrote:
| Yes, and there have been bad actors in the government who do
| that to try and avoid accountability. Hopefully they usually
| get overruled by someone with good sense in the executive
| branch. But if not, the judicial branch could overrule an
| invalid classification and order it be made public.
| ceejayoz wrote:
| > Serious question: if the raw data could potentially undermine
| public trust in the US government, can it be classified as a
| matter of national security?
|
| No, probably not. The government doesn't really have the
| authority to classify information generated by private entities
| like Pfizer barring specific legislation.
|
| The closest you'd likely come is
| https://en.wikipedia.org/wiki/Invention_Secrecy_Act, but that
| allows (temporary) suppression of patents, not clinical trial
| data.
| walterbell wrote:
| _> The government doesn 't really have the authority to
| classify information generated by private entities like
| Pfizer barring specific legislation._
|
| They can classify patents at will.
| ceejayoz wrote:
| Yes, and I cited the very specific legislation allowing
| that.
| [deleted]
| walterbell wrote:
| Thanks for the link. My comment was posted before you
| added the citation.
| mike_d wrote:
| > The government doesn't really have the authority to
| classify information generated by private entities
|
| Pfizer is a defense contractor. It is pretty standard
| boilerplate that when you receive DoD funds the government
| can restrict access to information, even unrelated to the
| products or research directly attributable to that funding.
|
| Not to say that I think the government would actually do
| that, just that they could.
| kklisura wrote:
| You know what else could undermine public trust in
| institutions? Classifying this data as a matter of national
| security.
| brianmcc wrote:
| I remember writing the following about the AstraZeneca vaccine in
| Nov 2020 when concerns were raised with it.
|
| Two things can be both be true:
|
| - the vaccine is safe and effective
|
| - parts of approach in running studies weren't as good as they
| should have been
|
| Seems to perhaps apply here too.
| fabian2k wrote:
| Why not? Any mistake or design flaw in the trials reduces their
| value, it doesn't completely eliminate it.
|
| The mistake in the AZ trial is something I consider extremely
| embarassing and stupid (assuming the published information
| about it is correct). It's the kind of mistake nobody that
| actually works in a lab should make, and I really question the
| competency of the people involved here. But in the end this
| meant that a part of the study got a half-dose of the vaccine.
| That makes the interpretation a bit more difficult, but it does
| not invalidate the trial.
| hanselot wrote:
| fabian2k wrote:
| At this point the original phase 3 trials are pretty much
| irrelevant, we have so much more data now from the actual use of
| the vaccines. They really play no role at all now. In terms of
| effectivness we're three major SARS-CoV2 variants further, and
| for looking at rare side effects we have billions of doses now
| compared to tens of thousands in those trials.
|
| I'm all for putting pressure on everyone in Science to publish
| more raw data. This kind of data is likely more complicated
| because it's really hard if not impossible to anonymize the
| actual patient-level data. It still should be as accessible as
| possible to other scientists.
| diroussel wrote:
| It's hard to analyse the data from treatments, as treatments
| don't have a control group. Trials are designed with control
| groups, placebos and double-blind process to gather data and
| then analyse it.
|
| We may have loads of data from real people being treated, but
| good luck trying to analyse it in a scientific way.
|
| We need effective vaccines, and we need to be able to trust
| them. Just treating people with a vaccine doesn't always give
| that trust and confidence.
|
| (I hope I got my medical terminology right, I'm not a
| clinician, but have been close to covid-19 related medical
| research)
| fabian2k wrote:
| It's much, much harder to understand the data if you don't
| have a control group. But once you have an effective
| treatment, you no longer have a control group if you're at
| all ethical. You cannot keep a working treatment from people
| just to do more science, that is deeply and fundamentally
| unethical.
|
| So the moment we knew the vaccines worked, the science got
| harder. Well, that point also save an enormous amount of
| lives, so I don't think this is something to complain about.
| It's still possible to do a lot of good science now, even
| randomized controlled trials. They just can't compare to
| unvaccinated groups, but you can still do stuff like compare
| double-vaccinated with triple vaccinated.
| lurquer wrote:
| > But once you have an effective treatment, you no longer
| have a control group if you're at all ethical. You cannot
| keep a working treatment from people just to do more
| science, that is deeply and fundamentally unethical.
|
| You could easily find millions of potential study
| participants who don't want the vaccine. The study wouldn't
| be double-blind, but it would be single-blind and better
| than what they chose to do.
| incrudible wrote:
| A lot of data now shows that double vaccinated are infected
| with Omikron more often than unvaccinated. I do not know
| what causes this or what it means, but imagine for a moment
| there were no unvaccinated left: Your vaccine could be
| arbitrarily harmful with a new variant and you would not be
| able to tell.
| fabian2k wrote:
| That is simply wrong.
|
| There is one study that listed negative effectiveness
| against Omicron for the vaccines. That study did not
| control for any confounding factors, it simply was not
| designed to measure this particular thing, it was focused
| on a different question.
|
| There are some strong fundamental reasons why we would
| not expect the vaccine to be harmful with future
| variants. And even then we would still be able to detect
| if it was.
| incrudible wrote:
| It is not one study, national data from Denmark, UK,
| Germany and Canada shows that double vaccinated are
| infected at a higher rate. I am not jumping to
| conclusions that this means efficacy is negative, because
| that would require a _controlled trial_ with an
| unvaccinated group. Do you catch my drift?
| bigfudge wrote:
| There's no way of running a controlled trial of this sort
| when 80% of the population have already been vaccinated.
| You can design better or larger observational studies
| though.
| fabian2k wrote:
| Please show the data that claims that double vaccinated
| are more likely to be infected than unvaccinated people
| by Omicron. And raw infection counts are not an answer
| here as the vaccinated and unvaccinated people are
| clearly not matched populations you can compare without
| adjustments.
| mike_d wrote:
| Depending on the phase of clinical trials, they don't need to
| be double blind or controlled.
|
| You can absolutely analyze real world mass vaccination data
| in a scientific way. Just treat pre-vaccination and post-
| vaccination as two different patients. The numbers are so
| large that other factors (environmental, genetics, etc)
| cancel out. So if your post-vaccination population has a rate
| of heart attacks 80% lower than the established norm, you
| know that is worth further investigation.
|
| (Full disclosure: my family used to own a company that ran
| clinical trials for pharmaceutical companies)
| timr wrote:
| > You can absolutely analyze real world mass vaccination
| data in a scientific way. Just treat pre-vaccination and
| post-vaccination as two different patients.
|
| Yes, you can do this. No, it's not the same.
|
| With this kind of uncontrolled, longitudinal study, yes,
| some things are quasi-controlled: genetics, possibly
| lifestyle, other drugs, etc. Anything that plausibly
| doesn't change (much) in a single person from time A to
| time B.
|
| Some things you can't control for, but still matter:
| changes in behavior due to the event itself. Placebo
| effect. Sample bias (e.g. the patients receiving treatment
| X were selected to receive treatment X _because it was felt
| that they would benefit from it_. This is subtle, but can
| really mislead. In the example of vaccination, imagine that
| the people most likely to vaccinate their young kids are
| _also_ the ones most likely to keep their kids isolated at
| home...)
|
| > So if your post-vaccination population has a rate of
| heart attacks 80% lower than the established norm, you know
| that is worth further investigation.
|
| The key part of that is the last three words: _worth
| further investigation_. To get the final answer, you still
| need a controlled experiment.
| aeternum wrote:
| > This kind of data is likely more complicated because it's
| really hard if not impossible to anonymize the actual patient-
| level data. It still should be as accessible to other
| scientists as possible.
|
| I disagree with both parts of this. Why not associate each
| patient with a number then log all data against that? Patient
| names and other identifying information should simply never be
| attached to trial-related data (except for in a well-protected
| lookup file with highly restricted access).
|
| Making scientific data accessible only to other scientists is
| highly anti-scientific. Feynman, one of the greatest scientists
| of all time has many quotes around exactly this mindset:
|
| "Have no respect whatsoever for authority; forget who said it
| and instead look at what he starts with, where he ends up, and
| ask yourself, 'Is it reasonable?' ... we will doom humanity for
| a long time to the chains of authority, confined to the limits
| of our present imagination. It has been done so many times
| before."
|
| "Science is the belief in the ignorance of experts"
|
| "Our freedom to doubt was born out of a struggle against
| authority in the early days of science. It was a very deep and
| strong struggle: permit us to question - to doubt - to not be
| sure. I think that it is important that we do not forget this
| struggle and thus perhaps lose what we have gained."
| throwawaygh wrote:
| Anonymization is difficult and sometimes impossible because
| reidentification attacks are _extremely_ difficult to
| prevent. Anonymization is much more complex than people
| typically assume; see [1,2] for surveys.
|
| The more data you release, the more difficult it is to ensure
| that subjects cannot be reidentified by combining the
| "anonymized" dataset with other publicly available data.
|
| Important note: It's not _just_ a case of putting in the work
| and being willing to share. There are impossibility results
| in this space. That is, there are reasonable formal threat
| models for which it is mathematically impossible to release
| any version of the dataset that is (a) useful (ie contains
| enough data to replicate findings) and (b) not subject to
| unacceptable levels of reidentification.
|
| I am generally in favor of releasing data and
| code/spreadsheets, but anything involving patients becomes
| difficult quickly. There are also reasonable middle grounds
| between "no access for anyone" and "throw it in a public s3
| bucket". E.g., making data more available to researchers and
| medical practitioners -- or even sufficiently interested &
| motivated members of the public -- but under strict data
| handling rules, enforceable audit trails, and legal
| consequences for being reckless with sensitive patient data.
|
| Hell, odds are better than even that your employer made you
| sign a document that would allow them to sue you into
| oblivion for forwarding some sure-to-be-doomed product launch
| draft to the wrong person. Being at least that careful with
| fine-grained medical data on hundreds/thousands of patients
| isn't exactly unreasonable...
|
| Drawing a hard line on 100% complete, anonymous, and
| consequence-free access to troves of patient data isn't a
| reasonable position.
|
| [1] https://journals.plos.org/plosone/article/file?id=10.1371
| /jo...
|
| [2] https://www.ccs.neu.edu/home/jullman/cs7880s17/DSSV.pdf
| msbarnett wrote:
| Simply removing the name isn't enough to anonymize the data,
| because as another commenter noted, the data submitted
| includes detailed patient histories and information about all
| of their other conditions, which is more than enough to
| uniquely identify someone.
|
| And you can't simply strip out that data, because a lot of
| the subsequent analysis of effectiveness is _dependent_ on
| it.
| fabian2k wrote:
| I'm not fully up to speed with all the research here, but as
| far as I understand it's quite easy to de-anonymize many
| datasets of exactly the kind you describe. If you're not
| really, really careful there will be lots of information in
| simple demographic data that could easily be matched to other
| data sources.
| gpm wrote:
| > Why not associate each patient with a number then log all
| data against that? Patient names and other identifying
| information should simply never be attached to trial-related
| data
|
| Because "patient name" isn't the only way a patient can be
| identified.
|
| "Male, 27, admitted to Sunnybrook hospital for stitches to
| his forehead due to knife wound on January 20th 2022" is
| almost certainly uniquely identifying (actually it's made up
| so it probably identifies no one), is in the person's medical
| data for the trial, and clearly needs to either be redacted
| or in some other way separated from the other line that says
| "contracted HIV on January 19th 2022". Yet both are relevant
| when investigating causes of side effects.
| cogman10 wrote:
| I think HIPAA is something we should be re-evaluating as a
| nation. Back in '96 it was certainly a good idea given how
| devastating things like an HIV diagnosis could be for a
| family member in a fundamentalist family. Or the impact of
| said diagnosis on insurance coverage.
|
| With the ACA, the insurance coverage problem is gone. Pre-
| existing conditions can't be used as a reason to deny or
| change insurance rates.
|
| The Fundamentalist problem exists, but seems like much less
| of an issue with LGBT acceptance being so much better now
| than it was in the 90s.
|
| I just don't think that health information is so valuable
| that guarding it like a state secret is warranted. I'm ok
| with the notion of putting in basic safeguards like not
| attaching a patient name with the information but I don't
| see it has horrible if some system can infer absolute
| identity from that stuff.
|
| After all, seems far more scary that my web browsing
| generates a far clearer picture of who I am than what you
| could glean from my medical records.
|
| Having health information public and easy to gather would
| (potentially) be a significant boon to the study of health
| information. It would also make it a lot easier for us to
| make health information sharing systems so you don't have
| to fill out the same 500 forms every time you go to a
| different hospital or doctor.
| YarickR2 wrote:
| six week old pregnancy terminated while her official
| partner is on tree month long business trip. instant
| divorce.
| nsainsbury wrote:
| Actually, I would argue we don't have good data from the use of
| the vaccines. Part of the reason is because all the mechanisms
| used for reporting things like side-effects, effectiveness,
| etc. have a litany of confounding variables which haven't been
| controlled for which could be far better corrected for/isolated
| with good studies.
|
| For example, when it comes to vaccine side-effects, I don't
| think there exists a true account for how common the side-
| effects really are. The most common way to report side-effects
| (VAERS, and similar national databases) are dismissed due to
| the self-reporting nature, local GPs frequently dismiss side-
| effects and tell people to just go home and take a Panadol with
| zero reporting going on (I had this happen to me - started
| experiencing severe chest pain 2 days post-Pfizer. Subsequently
| saw a cardiologist after months of pain and his comment to me
| was "I'm seeing young people like you daily and your cases are
| going widely underreported"), etc.
|
| Likewise, when it comes to vaccine effectiveness, there are a
| million and one confounding variables from % of the population
| that already had natural immunity, covid variants, health, age,
| seasonality, societal lockdowns, isolation, etc.
|
| Also, it's important I think for us to raise the bar to the
| highest possible standard when you're talking about a medical
| intervention that was forced under significant duress (loss of
| job, social stigma, public/medical shaming) on a substantial
| percentage of the world's population. We should not be content
| as a society to come within inches of worldwide medical
| authoritarianism without asking some seriously hard fucking
| questions and imposing the absolute strictest and highest
| possible scientific standards to justify why.
| fabian2k wrote:
| But we actually don't need the VAERS data to examine if the
| vaccines are better than the alternative. We do need it to
| provide accurate labels for side effects, but that is all.
|
| We can simply look at infection, hospitalization and death in
| vaccinated and unvaccinated populations. If we properly match
| the populations, we can determine if the vaccine saves lives,
| and it turns out that they do save a lot of lives.
| nsainsbury wrote:
| That's true. And I agree that the vaccines have saved lives
| - mostly, of the old and the very sick/unhealthy.
|
| However, what is less clear today is whether there has been
| a net positive or negative effect of the vaccine for young
| healthy people. You can only come to that conclusion if you
| actually had high quality data and studies on vaccine side-
| effects, effectiveness in population groups stratified by
| age, health, etc.
|
| I suspect that the vaccines, mandates, lockdowns, etc. have
| been a net negative for the overall health of young (<50),
| and healthy people, and the body of scientific evidence
| will support this position in the future. It's just cloudy
| today because it's wrapped up in politics...but the science
| will eventually win out.
| ummonk wrote:
| "If we properly match the populations," - that's a big if
| though. Without any matching, vaccines appear to have
| negative value because older people are more likely to get
| vaccinated, but even controlling for age there are a
| variety of potential confounding variables like general
| health, risk-avoidance, etc.
| walterbell wrote:
| _> They really play no role at all now._
|
| The (small) controlled trial data can be combined with the
| (large) uncontrolled mass-population data, e.g. one can look at
| the larger dataset for corroboration of weak signals in the
| smaller dataset.
|
| New controlled trials can be started, where further evidence is
| needed.
| cyanydeez wrote:
| this stuff just smacks of iignorance and attempts to continue
| tompoliticize clear public health concerns.
|
| i am sure there will be a red herring in all the data that will
| cash a small enough shadow.
|
| but this jibbering is about dragging science down to the level
| of far right ignorance, which is the onlymplace concervatives
| can win.
| planetsprite wrote:
| Speculation is made either way without datapoints. What's the
| harm in being transparent if at worst some spurious (but
| provably spurious) correlations mislead a few people already
| prone to mistrust? Higher transparency would also dissolve a
| lot of the claims that the pharmaceutical companies are
| "hiding" something regarding the actual effectiveness of
| their vaccines and therapeutics.
| bigfudge wrote:
| I don't think people claiming pharma companies are going to
| be satisfied by data dumps. They will simply claim the data
| are fabricated.
|
| There is so little correspondence between reality and
| claims already- I think you're making the mistake that the
| discourse is in good faith. It doesn't seem to be to me.
| invokestatic wrote:
| I'm a software consultant for Pharma companies and have worked on
| projects that used the same kind of study design as the Pfizer
| COVID vaccine (Kaplan-Meier).
|
| "Raw data" is submitted to the FDA in the CDISC format. This
| format contains a lot of pretty sensitive medical information,
| including which diseases a patient has, their medical history,
| what drugs they take, etc. This is supposed to be anonymized, but
| if the public were to be able to get this info, I strongly
| believe there is enough information to re-identify patients. And
| it's not as simple as just removing the sensitive medical data
| because the primary or secondary analyses may be dependent on
| them.
| rvnx wrote:
| And ? Where is the bad thing to open a dataset of comorbidities
| and related / suspected effect of vaccines / medications ?
| jjulius wrote:
| >And ?
|
| What's not to get? OP said:
|
| >... I strongly believe there is enough information to re-
| identify patients.
|
| Their concern is that just dumping raw data like this into
| the public would be a massive violation of privacy for
| countless individuals.
| rvnx wrote:
| Re-identify based on what ? There are no databases that you
| can link against if you strip out the major identifiers
| (like city and date of birth).
|
| It's for the benefit of patients, and this raw data is
| already available, but under a loose NDA for commercial
| partners and researchers...
| throwawaygh wrote:
| _> Re-identify based on what ?_
|
| The fact that you poo-poo this question is telling.
| Preventing re-identification attacks is incredibly subtle
| and sometimes impossible. Removing "city and date of
| birth" is nowhere near sufficient.
|
| _> this raw data is already available, but under a loose
| NDA for commercial partners and researchers... _
|
| Yes. It's available to people who have their real
| identities tied to their access and can be sued into
| oblivion or possibly even prosecuted for wanton misuse of
| the data. Surely you see how this is different from
| throwing it on a public s3 bucket, right?
| throwawaygh wrote:
| What is your full name and address? Age? Weight? Height? Eye
| color? Blood pressure? What STDs do you have, if any? How
| often and how much do you drink? Smoke? Any history of drug
| use? Mental disorders? What about your family?
|
| Where is the bad thing in you posting this information here
| right now?
|
| Actually, that's not even analogous. A better analogy would
| be you post all this info under a pseudonym -- e.g., "rvnx"
| or something like that -- and then the mods doxing you
| without your consent.
| cogman10 wrote:
| I'm 36, I weigh 190 lbs, I'm 6'1. My eyes are green. Blood
| pressure 120/80 (last I checked). No STDs. I drink once a
| week about 3 servings. I don't smoke. I don't use drugs or
| have a history of metal disorders. Depression runs in my
| family.
|
| I only really hesitate to post full name and address but,
| frankly, I'm sure given my user handle it wouldn't be
| terribly hard for someone to find both of those.
|
| So tell me, what harm have I done to myself by sharing this
| information?
| [deleted]
| mberning wrote:
| It's incredible how quickly pharmaceutical companies rehabbed
| their deservedly awful reputation by using the pandemic. Years
| from now, maybe decades, I'm sure we will find out there were
| very troubling results from the clinical trials that were swept
| under the rug.
| tomohawk wrote:
| > After a freedom of information request to the agency for
| Pfizer's vaccine data, the FDA offered to release 500 pages a
| month, a process that would take decades to complete
|
| 75 years, actually.
|
| I don't mind trusting what someone says, but I need to be able to
| verify it.
| AnimalMuppet wrote:
| Yeah, that was absolutely ridiculous. What are they doing,
| evaluating it pixel by pixel? That's 25 pages a day (20 working
| days a month), or 3 pages an hour (8 hour day). Does it really
| take 20 minutes per page to prepare the data for release? Do
| they really only have one person they can put on the task?
|
| They deserved to have that both mocked and slapped down. It was
| an insult to both our intelligence and our right to know the
| truth about what they want us to take.
| diroussel wrote:
| The BMJ seems to be on good form. First publishing the whistle
| blower account of pfizer [1], and now this call for raw vaccine
| trial data.
|
| I commend them on this approach, and can only hope that the
| vaccines are as safe and effective as we have been told.
|
| [1] https://www.bmj.com/content/375/bmj.n2635 - "Covid-19:
| Researcher blows the whistle on data integrity issues in Pfizer's
| vaccine trial"
| YXNjaGVyZWdlbgo wrote:
| I can only recommend this article about bmj:
| https://respectfulinsolence.com/2021/11/15/wtf-happened-to-t...
| hazza_n_dazza wrote:
| I cannot recommend that article. Science exists in a realm of
| science, just because a major medical organisation is
| misunderstood dosen't make them 'antivaxxers'. BMJ is asking
| for open data, something I think many people here could
| utilise and find value in.
| [deleted]
| srcreigh wrote:
| Yup. I'm not sure how many non anti vax people who comment in
| support of BMJ actually read the original article.
|
| If you are them please reveal yourself and explain how you
| found nothing wrong with the original article. Most of these
| comments in the threads just seem like tired knee jerk anti
| big media / anti vax memes.
| diroussel wrote:
| I'm a pro vax person, and I've had three vaccine doses. But
| I have a few anti-vaxers around in friends and family, and
| it can be hard to argue with them that vaccines are totally
| safe and effective for them (not talking about the
| population as a whole).
|
| I would like safe and effective vaccines, and I would like
| to know that the vaccines I have been administered have
| really got the backing of truly scientific trials.
|
| Surely releasing the trial data is a net positive for all
| the national populations that have paid for it.
| drukenemo wrote:
| In your definition, an anti-vaxxer is someone who refuses
| the covid-19 jab or any jab? If it's the former, I find
| that quite disingenuous.
| miles wrote:
| > it can be hard to argue with them that vaccines are
| totally safe and effective for them
|
| That is especially hard since there is simply no way to
| know for sure whether the vaccine will be "totally safe
| and effective for them":
| https://news.ycombinator.com/item?id=29206892 .
| Fogest wrote:
| This is my thing as well. I work at vaccine clinics and
| obviously am onboard with the vaccines, however I still
| feel bad helping administer these vaccines to people who
| are hesitant. Because of government vaccine mandates or
| employer vaccine mandates it has made some people who
| come in feeling "forced" to get a vaccine. And it
| honestly does not feel like this is the proper scientific
| or medical way. It sucks to give someone a vaccine when
| you know they aren't fully trusting in the science behind
| it. A lot of people are having to choose whether they put
| uproot their whole families and lose their jobs, or
| whether they just go and get the vaccine. They are not
| technically forced, but it honestly seems like it pretty
| much is. For me it does not feel morally right to have
| people who feel forced to make medical decisions they
| don't agree with without even having access to the raw
| data that would help indicate it's safe.
|
| And it doesn't help that there have been multiple leaks
| now regarding companies like Pfizer that have made them
| appear even more shady. Not to mention Pfizers multiple
| billion dollar lawsuits/fines in the past. I don't blame
| some people for being skeptical, nor do I blame them for
| feeling like they are forced to get something they aren't
| sure they can trust.
|
| It's hard to just trust an organization that has already
| done multiple things in the past to make you not want to
| trust them.
|
| The cases that feel even worse for me are the people who
| have had previous doses and are coming in for 2nd doses
| or boosters but have had previous unexplained side
| effects shortly after the doses. Like side effects that
| are beyond the "normal" ones. Many of these people have
| visited hospitals or their family doctors, had multiple
| tests, and get told that nothing is wrong, or that they
| are not sure what is wrong. And these kind of cases are
| often not counted an "adverse effect". I alone have had
| many people tell me these things. They often again feel
| forced to get the next dose because of pressure from
| their employer or government. And it just feels bad
| giving them the vaccine, because they don't sound anti-
| vaxx, they sound like they legitimately had a severe
| reaction to the vaccine. But often doctors and public
| health agencies will brush these incidents off and
| pretend like it's not because of the vaccine. They are
| dismissed and considered an anti-vaxxer making things up.
| And this really sucks. This is not the way medicine
| should work.
| ceejayoz wrote:
| https://sciencebasedmedicine.org/what-the-heck-happened-to-t...
| has some stuff to say about the author (about 2/3 the way down),
| including signing a petition doubting that HIV causes AIDS.
|
| > Indeed, Doshi has history of playing footsie with the
| antivaccine movement, amplifying antivaccine conspiracy theories,
| downplaying the severity of influenza and thus feeding
| antivaccine narratives, using sleight-of-hand to downplay the
| effectiveness of flu vaccines, and generally playing the role of
| a false skeptic with respect to vaccines. At this point, I can't
| help but note that Doshi also once signed a petition
| "questioning" whether HIV causes AIDS.
| analyte123 wrote:
| Many of the accusations in this allegedly science-based article
| are purely guilt by association. In many cases there's no
| _association_ at all, just fringe people referencing Doshi 's
| peer-reviewed publications. If Hitler was against cigarettes,
| does that mean I should smoke? I can literally not find two
| consecutive sentences in this entire article without a snarky
| ad hominem or tribal flag-wave.
| drcross wrote:
| I'm so sick of comments like this. I'll read the goddamn
| information presented to me and use my own critical thinking
| skills to determine what I see as useful. Whatever past the
| person has, if there _is_ a potential issue with something, it
| 's someone like this who has been paying attention with a focus
| on the matter who will alert us first.
| ceejayoz wrote:
| > I'll read the goddamn information presented to me...
|
| Cool. What if it's misleading?
|
| > use my own critical thinking skills...
|
| Neat. What if it requires some domain expertise to detect a
| reasonable-sounding, but actually false claim?
|
| As a programmer, I can probably convince a non-techie of
| quite a few incorrect beliefs about computers if I put my
| mind to it. If I have a _history_ of doing that sort of
| thing, that 's a perfectly relevant issue to raise.
| drcross wrote:
| The chairman of Thompson Reuters, who professionally fact
| check information for Facebook, is on the board of Pfizer
| which is a grave conflict of interest and there's been
| repeated examples of them lying outright so all bets are
| off on who you may suggest is being misleading.
| tazedsoul wrote:
| Love how people won't even admit this fact into the
| conversation. Thank you, sincerely, for bringing this up.
| Shartacus wrote:
| blast wrote:
| > Cool. What if it's misleading?
|
| That question applies in literally every case and therefore
| doesn't change change the optimal strategy.
|
| > What if it requires some domain expertise to detect a
| reasonable-sounding, but actually false claim?
|
| That question applies just as much to links from
| "sciencebasedmedicine.org" as it does to the OP.
| ceejayoz wrote:
| > That question applies just as much to links from
| "sciencebasedmedicine.org" as it does to the OP.
|
| Sure, which is why being aware of _both_ is valuable.
| choward wrote:
| > Cool. What if it's misleading?
|
| So? That's up to you to determine.
|
| > Neat. What if it requires some domain expertise to detect
| a reasonable-sounding, but actually false claim?
|
| You don't need an expert to tell you transparency is good.
|
| * Edited to be less snarky
| ceejayoz wrote:
| > So? That's up to you to determine.
|
| Sure, which is why I find it useful to know about the
| source, and criticism of their past work, when evaluating
| an op-ed just published in a field that requires
| substantial domain knowledge to fairly evaluate claims. I
| linked an article not very charitable towards the author
| because I consider it valuable in exactly this sort of
| determination.
|
| > You don't need an expert to tell you transparency is
| good.
|
| You don't need an expert to tell you complete
| transparency can have downsides, especially where
| patients' medical data is involved.
|
| HN _usually_ takes a dim view of "if you have nothing to
| hide you have nothing to worry about", but the rapid
| release of raw medical records is the sort of scenario
| where people may have lots to hide.
| dang wrote:
| Please don't cross into snark and attack like that. It
| adds poison to the ecosystem and weakens your argument.
| More explanation here:
| https://news.ycombinator.com/item?id=30016018.
|
| If you wouldn't mind reviewing
| https://news.ycombinator.com/newsguidelines.html and
| taking the intended spirit of the site more to heart,
| we'd be grateful.
| fleetside72 wrote:
| its really hard to ignore the persons character, but not
| addressing the argument (and instead talking about the persons
| character) is a logical fallacy.
| Shartacus wrote:
| How convenient it must be to discredit someone with a single
| buzzword like antivaxxer or conspiracy theorist. It must save
| you a lot of thinking.
| dang wrote:
| We've banned this account for repeatedly breaking the site
| guidelines.
|
| Crossing into personal attack and snark, besides being
| against HN's rules, has the effect of discrediting your own
| point of view. That is a poor trade to make in exchange for a
| momentary bit of venting. Not only that, but if your view
| happens to actually be correct, then it has the side effect
| of discrediting the truth, which is not in any of our
| interests. https://hn.algolia.com/?dateRange=all&page=0&prefi
| x=true&sor...
|
| Can you please not create accounts to break the HN guidelines
| with?
|
| https://news.ycombinator.com/newsguidelines.html
| dgsilshdjglsd wrote:
| ProvesMyPoint wrote:
| This is the reason I made a new account, because of people
| like you who find it too uncomfortable to even think you
| could be wrong.
| dang wrote:
| How do you know I don't 100% agree with you? The comment
| is just as much against the site guidelines either way.
| YXNjaGVyZWdlbgo wrote:
| Dude it's your fourth account in 5 minutes have some respect
| for yourself.
| Shartacus wrote:
| choward wrote:
| I love how people attack the character of anyone who says
| anything even remotely against the pharmaceutical industry and
| their narratives. They like to find some sort of evidence that
| they are one of those "anti-vaxxers" and think that discredits
| them. Now they don't have to debate anything.
|
| How about you argue with the points made in the article? Do you
| disagree with anything in the article? Is their dreaded
| "misinformation" in it. If so point it out and ideally provide
| some evidence.
|
| I am pro transparency especially when it comes to a global
| pandemic. I've always been that way. I'm not going to change my
| opinion because some other person has the same opinion. I don't
| give a rats ass who wrote the article. It could have been Santa
| Claus. I like to read articles and do my own research and form
| my own opinions. People like you who want to try to discredit
| people so you can silence debate are the biggest problem in
| this pandemic.
|
| Oh, and you know who else got AIDS and HIV completely wrong?
| Dr. Fauci.
| readingnonsense wrote:
| ceejayoz wrote:
| > Do you disagree with anything in the article?
|
| Absolutely, yes. I believe there to be an acute public health
| interest in not letting antivax nuts run wild on raw data
| like they do with VAERS, despite clear disclaimers not to do
| so. Additionally, as a participant in a couple of trials, I
| see a significant benefit to careful review before the
| release of data that might inadvertently reveal my identity,
| conditions, medical history, etc.
| choward wrote:
| So you are pro-censorship and anti-debate?
| ceejayoz wrote:
| I believe patients have a right to privacy that deserves
| careful protection.
| choward wrote:
| Are you for vaccine mandates?
| AnimalMuppet wrote:
| We started down this thread with you asking people to
| argue with the points of the article, not with who the
| author was.
|
| Now here you are, asking ceejayoz loaded question after
| loaded question. You sure look like you're trying to find
| some reason to dismiss what he says. That's not cool,
| especially since you started us down the "discuss the
| actual points" path.
| choward wrote:
| How are the questions loaded? They are relevant in making
| my point. In order to have debate you need information.
| If there's no transparency debate becomes pointless. The
| debate just comes from to who you trust and not real
| data.
|
| ceejayoz said they're pro medical privacy but thinks that
| people should have to let people know if they're
| vaccinated. It makes no sense.
|
| They also want people to be fired from their jobs for not
| taking a vaccine whose data isn't being released.
|
| In summary I find it hypocritical to be against vaccine
| transparency but for mandates. It's also hypocritical to
| be for medical privacy but be for vaccine mandates.
| ceejayoz wrote:
| That describes a wide variety of proposals.
|
| I unequivocally support it for healthcare workers.
| brandmeyer wrote:
| There's no point in aiding someone whose interest lies in
| flinging monkey poo instead of actually having a good-
| faith debate.
| ALittleLight wrote:
| Ahh, trust in institutions through obscurity.
| ceejayoz wrote:
| Trust in institutions through difficulty of a global
| cover-up requiring the cooperation of nearly two hundred
| countries across nearly ten billion doses administered?
| Sure.
| readingnonsense wrote:
| foolyvaxxed wrote:
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