Thank you! This was a point always emphasized in our education as program evaluators--that even the most technically accurate data is useless at best, dangerous at worst, if it is not communicated clearly enough to inform timely, effective decisions.
With health information and disinformation traveling at the speed of light--sometimes with catastrophic consequences --health communication skills are more crucial than ever.
(As an aside, I too have turned down potentially lucrative opportunities in my area of interest. I would rather continue to volunteer my skills than sell false hope).
Yes, transparency gets punished. Think of the information provided on the back of a shampoo bottle. There are a myriad of websites and social media that attack the individual ingredients without understanding it's the mixture of different ingredients that helps mitigate their concerns. Instead, we now have sulfate-free and preservative-free and paraben-free and salt-free, all completely unnecessary. Preservative-free is especially dangerous because personal care products are not food and they do not get consumed as quickly as food does. Preservatives in these products are essential to their safety.
It's not the transparency that's the problem, it's the misinformation that is perpetuated for clicks and likes. Fear-mongering makes money and sadly devalues the honest critics and the good criticism that really does keep for-profit companies more in touch with consumers, their needs, their fears and their desires.
Absolutely spot on. To date, the emphasis has been on publishing research papers - which although important, is nearly invisible to the public (and has its own credibility problems). There's rarely an effort to communicate value and meaning apart from investor/corporate presentations, which also have their bias and limited audience. We've given misinformation the internet and every communication tool, and almost nothing to effective valuable science communication. Thank you, retired research scientist.
I couldn't agree more. Scientific publishing is nearly invisible to the general public - and it seems as if all scientific communication to the public is about generating products and/or maximizing shareholder value. Unfortunately the selling of supplements to cure everything from Alzheimers to cancer has also spread like wildfire.
My sympathies on the funding issue in particular. As far as I can tell, the most significant factor is the amount of funding. And as you point out at length, that's tiny. Misinformation has a business model, true information is a public good. I just have no idea what to do about it.
Science illiteracy cannot be remedied by post hoc communication no matter how well done. Unfortunately, having an illiterate public is extremely lucrative for certain people. For others it is an important foundation of social and economic inequality. For many powerful interests this is a desirable. While these values prevail (as they have through government capture) science communication will remain underfunded and deliberately marginalized.
Science illiteracy is NOT the problem. We cannot expect every citizen to understand science nor do we need them too. Lack of trust in official sources is the problem. As long as our regulatory agencies remain conflicted and/or captured due to receiving a large portion of their funding from industry, they will be considered untrustworthy by much of the public.
I absolutely agree that we cannot and should not expect everyone to understand the science. That being said, when institutional trust fails, where do people turn? If science communicators can fill even a bit of that void in trust by giving people the tools to feel empowered and learn for themselves, that’s worth funding, no?
I agree, not everyone needs to understand science, but I do think that everyone should have an appreciation for science, and how the scientific process has improved all our lives. I think that science education -particularly biological science- education needs to be improved. While I would never expect everyone to become a molecular biologist, I do think that everyone should understand enough to trust the experts in the scientific and medical communities. At the moment, I hear a lot of comments like "they got it wrong during covid, so why should I trust them now?"
I think we need to do better at explaining that science is a process - sometimes a slow one at that - not a priesthood.
I agree that lack of trust is a problem but disagree with how you interpret government capture. Regulatory agencies are funded through fiscal appropriations—through taxes. They do not receive money from industry. The “capture” occurs in the legislative process where corporate lobbying dramatically affects the regulations that agencies enforce. “Capture” also occurs in court decisions when the government is unable to defend the public interest (or declines to do so because of capture) and that role falls to privately funded non-profits. Ultimately this goes back to legislative and executive decisions limiting the power of regulatory agencies to protect public interest. More recently regulatory agencies have been hobbled because of slashed workforces. The capture occurs in legislatures, not in the agencies themselves.
We DO need an electorate that is educated in basic science. Take water for example. Arsenic is naturally occurring in many watersheds. It is not harmful at naturally occurring levels. But if the public does not understand what parts per
million or parts per billion mean in everyday life then people will not understand their own municipal water quality reports. They cannot make informed decisions about acceptable contaminant levels and unacceptable ones. That ignorance leaves people vulnerable to manipulation and fear mongering.
Effective communication—on any topic—requires shared understanding of basic concepts. It requires a shared basic vocabulary. In science and health communication people need to agree on how the fundamental scientific process works. People need to understand what different kinds of evidence mean and how they are used. Normally that is taught in fifth grade but it is very obvious that many people misunderstand or have forgotten what they were taught.
This is what I meant by scientific illiteracy. Not everyone is going to take advanced human pathophysiology and they do not need to. But people do need to know how to formulate reasonable questions to make “doing your own research” meaningful.
The scientific process cannot provide answers to every question for very clear specific reasons. When people do not understand that they often ask unanswerable questions. This leads to unnecessary frustration. Simply not knowing that their questions cannot be answered in the way they are posed (but could be answered with reframing) leads people to mistrust rather than just misunderstanding. That is a normal emotional response. Unfortunately this is happening on an enormous scale with serious public consequences. People’s emotional vulnerability makes them easy targets for manipulators. At that point the task is not clear scientific communication but substantial re-education which is quite different from communicating with even a modestly well educated public.
We agree on a lot but I'm afraid you are mistaken about the funding of regulatory agencies. Pres. Reagan started a policy of making industry help to fund their regulatory agencies by charging fees, a change that has led to regulatory agencies regarding large corporations as their most important customers. Within the FDA, 45% of their budget is funded through fees from industry users.
Interesting. It will follow up on that. I remember the rationale for having companies support the regulatory agencies but I didn’t connect it. I worked in a completely different regulatory environment at the state and federal level. There are fees in environmental and cultural compliance but they are most similar to court filing fees. They are small. Generally companies pay contractors for doing the work which is separate from the agency. Ironically, it is the taxpayer who has to pay for remediation, generally speaking. Polluters and looters walk away. Obviously this is completely different than the FDA.
You are right in that science has lost the public trust. There are many reasons for this. I do also think that science literacy (or the lack of) contributes to this. Science has become so complex, and talking with my non-scientists friend and neighbors, they tell me that it all sounds like science fiction. I think that we have failed, as a nation, to properly educate our kids about science -especially biology-, its strengths and limitations, even how to interpret objective facts. I'm not sure how, at the moment, but I aim to restore the public's trust in biomedical science.
Well not everyone can be a scientist, what's missing is critical thinking and discernment. People believe what feels right or what fits their narrative or view of the world. People need to learn and value open-mindedness and curiosity. Instead we have a lot of sheeple.
Of course most people will never work as scientists. But people do need to understand how scientific claims are made and what they mean and don’t mean in a broad way. Scientific procedure has a definition. It can answer some questions but not others for clearly defined, specific reasons. Knowing those things is part of scientific literacy. When significant numbers of people believe that humans coexisted with dinosaurs, though, we have a bigger problem. (No, I do not mean birds.)
Question: Do you think people on the pro-vax side or the anti-vax side are "sheeple" or would you say that it depends on how they arrived at their position?
Although people on the anti-vax side are completely wrong, I would not call them "sheeple". I think the average person there has fallen for a deliberate malicious lying campaign, designed to prey on their fears and weaknesses, by professional liars who are doing this for power and influence. I have nothing but disgust for the professional liars. I call them in particular "evil", and I use the word deliberately. But I don't condemn the victims of the professional liars for not being perfect reasoners. Someone who gets taken by a scammer is not a "sheeple", they're just human.
You've hit upon what I like to call "the trifecta" of our modern day science institutions - effective communication, translation of science into products and policy, and funding. These are all interrelated, and critically important.
With misinformation travelling faster and farther than actual facts - communication becomes ever more important. Unfortunately, I think that we scientists need to become better at connecting with non-scientists and explaining things in more concrete terms. I know that I personally find it hard (years of training is hard to undo) to talk in terms of absolutes rather than probabilities. The general public likes absolutes - "this is 100% safe" not "the risk of side effect is very very low".
Because of this, funding is sometimes precarious, often tied to the whims of political discourse - those talking points that are devoid of the nuance that actual scientific understanding requires - and the policy positions that inevitably follow.
In today's world, effective scientific communication is more important than ever.
Excellent analysis. None of these problems are new at all, but I think we're really seeing the consequences of them coming home to roost in the past few years. Which means that the need to address them is even more urgent than ever.
Thank you for explaining that health and science communication is an evidence-based field of expertise. I appreciate that you have the expertise to know how to effectively present information, but also when and what needs to be presented. Thank you for your good work.
You make your case very well. I hope to see all of your “wish list” come to be.
I’m seeing a parallel with Dr. Offit’s brilliant piece today on the anti-vaxx crew’s weaponization of the transparency in vaccine package inserts, where even statistically insignificant side effects must be revealed. When someone wants to see something in a negative light, they will. Nevermind that the supplements they take don’t even have clinical trials to begin with. Different standards for different people/products all the way around.
First prosecute and imprison everyone involved in 2020, from Mecher and Kadlec to Fauci and the hundreds of local "public health" officials who enthusiasitically enforced the torture chambers. After those monsters are in prison, then we might listen.
Some parts of what was said .. that a large part of the public ( in the USA) does not trust vaccines, i agree with and I think this is really important to address. However, this is tricky... in my discussions with "vaccine skeptics" I encounter a lot of simply mistaken views. (eg the view that vaccines haven't been tested). Many of these views can actually be checked easily, but people don't check them, and don't seem to respond well to simple facts.
There are certainly issues that should be addressed and are complex... the role of funding and the potential for "industry capture" of the regulatory systems. i don't think those are easy issues to deal with.
No, we vaccine skeptics believe they haven't been rigorously tested against a placebo. And that the health of vaccinated vs unvaccinated children has not been rigorously compared over a long period of time. Are we wrong?
Well, we're getting into territory of the joke "Parachutes have not been tested in a double-blind randomized-controlled trial. Before sending further money to Big Fabric, parachutes must be tested to the gold-standard of evidence-based interventions.".
But actually taking it further: "Why are you opposed to this parachute-testing research? Will you admit that some engineers have said wrong thing about how parachutes work? And parachutes clearly don't prevent all injury, some people using them have still ended up with twisted ankles, broken bones, even spinal injuries. But someone said parachutes make for a soft landing. THEY WERE WRONG! WRONG WRONG WRONG! - so very *WRONG*!! DENOUNCE THEM!!! How can we trust recommendations for using a parachute when engineers won't immediate confess to telling such "noble lies"? The whole profession must stop being so arrogant, and give respect to the anti-parachute perspective."
erin, "control group" is the important word. A placebo is a specific type of control. If we compare unvaccinated populations against vaccinated populations as was done with smallpox, measles & polio, you are really comparing "the thing we want to compare" - how do unvaccinated people do compared with vaccinated people.
There are reasons to use placebos, though - for instance if you believe people will behave differently if they know their vaccination stautus... also, you MAY be able to distinguish reactions reactions to vaccines from "ordinary" events.
Working scientists think seriously about these issues.
That makes sense. What I have heard is that the latter day vaccines are not compared to placebo in testing, but rather are compared to prior vaccines, which seems to seriously skew the situation. Also, that while in the past, vaccines were recalled if a few people died, in covid widespread injuries and many deaths did not lead to stopping.
There is also concern in the vaccine skeptical camp that vaccines are being overdone, esp. in chiildren. Viz the situation where every brand new newborn is jabbed with Hep B in America, and side effects are discounted and minimized.
Have their been rigorous long term studies comparing the health of vaccinated and unvaccinated children? My sense of it is that the whole vaccination paradigm went off the rails -- if some vax is good, more and more must be better. That sort of a thing...
There really is a huge amount of material out there on this topic. Some of the original scientific reports are "pretty" readable, but I have to warn you, this does require pretty serious effort on your part to read these. Here is an example (you'll have to look it up) - this is about the trial of Measles vaccines in Britain in the 1960s (these trials were done after the Americans had actually made & tested Measles vaccines). But the British tested as well.
Vaccination Against Measles: Clinical Trial of Live Measles Vaccine
Given Alone and Live Vaccine Preceded by Killed Vaccine
Second Report to the Medical Research Council by the Measles Vaccines Committee*
Brit. med. Y., 1968, 2, 449-452 (this is the British Medical Journal)
"In order for real reform to occur, individual medical professionals will have to signal their disapproval around the present recommendations and vaccine safety testing. There is simply no way around it. This means they have to wake up from their slumber and confront the reality that they have been misled for decades."
Misled for decades??? The sort of program of building trust just doesn't work, because it doesn't address the problem of the fundamental demand of the anti-vaccine side: Confess public health supposedly engaged in a huge conspiracy and cover-up, and the outrage-mongers *caught* them.
They keep saying this is what they want. There's no way around saying they're wrong, which is info-dump, etc.
I think that the risks of vaccines have been underestimated for decades. For starters, the stated risks don't include the risks from manufacturing or administration errors under normal use rather than the trials run prior to approval.
I don't think this post was about reaching the professional anti-vaccine side or outrage mongers. It's about connecting with the public making choices about which vaccines to get for themselves or their children. When the pro-vaccine professionals consistently provide underestimates of the risks of vaccines that will need to be acknowledged before the measures of public trust in them will go up instead of down.
I don't mean the professional anti-vaccine side. I mean the people who have been victimized by the professional anti-vaccine side. Look at what you said: "that will need to be acknowledged before the measures of public trust in them will go up instead of down" - is this any different in substance (not tone) from what I characterized as "Confess public health supposedly engaged in a huge conspiracy and cover-up, and the outrage-mongers *caught* them"? Over and over, I see anti-vaccine commentators saying some variation of this. I'm just at a loss. I want to scream "THIS IS COMPLETELY NUTS! It's sheer gibbering insanity, a complete pack of lies you've been sold by some of the most evil people in media." (the idea that every single country in the world has covered this up, *for decades* yet, is utter lunacy). But I know I'm not supposed to do that, and worse, it'd probably be counter-productive. But I can't see anything that actually works. Wishful thinking about planting-a-seed ignores that it's barren ground.
Yes, there is a substantial difference between asking for acknowledgement of past failures to provide accurate assessments of the risk versus claiming that there is a "huge conspiracy and cover-up". I agree that the idea of a world wide conspiracy for decades is utter lunacy. Unconscious bias leading to a systemic problems remaining unaddressed by professionals is not.
Thanks for the reply. But, well, is the general claim then about incompetence rather than malice? Hanlon's Razor - "Never attribute to malice that which is adequately explained by stupidity"? Still, doesn't the claim necessarily involve every government's public health department, over *decades*, failing to notice the alleged problems? And isn't there a "catch-22" here, in that to maintain "no, this didn't happen, it's just wrong" is not doing the demanded acknowledgment?
No, it's not a claim about incompetence rather than malice. Everyone can be doing their job perfectly well, but if the system is not designed to catch certain types of problems, they will exist until a concerted effort to improve is made.
I'm not sure what 'demanded acknowledgement' you are referring to, but if you mean my statement needing to acknowledge the underestimate of the risks of vaccines from the consumer's point of view, I must point out that you can't truthfully make the statement that this didn't happen. The testing and analysis of vaccine data is tilted to the manufacturers needs, not the consumers. All consumers can do if vote with their feet and decide against getting vaccines. Which is what you want to change, correct?
I can make no demands of you or anyone else on this matter. I am only pointing out what I think will be required for the health care professionals to persuade more people to get their vaccines. If you choose to insist on claiming the data and its analysis cannot be questioned because "this didn't happen, it's just wrong", then public trust will continue to degrade.
Nope, all we want is the admission that wrong moves were made during covid. And we can't even get that. I was thinking about my previous exchange with Seth, where his perpective was "admit nothing, make excuses all the way". -- That is a much smaller ask than demanding confession of some conspiracy.
Seth has divided loyalties. He is radically pro free speech, yet made his alliance with people who denied free speech to dissenting doctors and others. Bah humbug. Even if all the dissenters were "cranks and liars" as he suggests elsewhere, don't those people deserve free speech too?
Erin, as a free-speecher, I would oppose such things as "medical misinformation" laws. But that is entirely different from having an intellectual respect for anti-vaccine beliefs. Indeed, it's standard to support the rights of Nazis and KKK'ers, while at the same time vigorously opposing their ideology (sort of what free speech is about) - and not in any "Both Sides" way. Truth is NOT in the middle between Nazis and e.g. Jews.
For the rest, I can just repost what I wrote earlier:
It would be absurd to claim any field is error-free. Of course when dealing with a new disease causing a horrible worldwide pandemic, scientific understanding changed over time, and some initial perspectives turned out to be wrong. However, that's completely different from the anti-vaccine narrative. Well-intentioned people doing the best they can under difficult circumstances (my view), isn't in the same universe as the fantasies of the right-wing fever-swamp.
Consider again where I wrote about the trap of being "bludgeoned with every Holocaust Denier talking-point (errors in survivor accounts, confusions in identifying former camp guards, mix-ups in records, etc), with the tiniest mistakes morally equivalenced to some of the most vicious lies ever told. The Holocaust Denier can then proclaim how people can't be expected to ever again trust the History Elites, unless maybe historians repeatedly grovellingly apologize to the Deniers, and grant them intellectual respect. Fundamentally, it's a demand for validating the whole grievance narrative and persecution complex that's been fabricated by hate-monger lie-machines."
That is, I would consider it unreasonable to claim that Holocaust Denial is caused in any part from historian's reputation "ruined by their own missteps". And the analogy is valid since it's the same playbook: Find some mistake somewhere, build huge lies on it, when called on the lies, point to the mistake (and then cry martyr).
I'll repeat that I see the appeal of the subtext: "That arrogant Establishment, they were lying to us, but we *caught* them. Our people-powered movement showed how those Elites, with their fancy-shmancy big-words college stuff, were no match for our just plain folks common-sense. [Buy our special merchandise]"
And that brings me back to where "communication" doesn't work. Once people form that sort of narrative, they don't give it up easily, if at all. If it's about of identity, facts basically don't matter. But a big mistake I think runs through this idea is that you can somehow work on the identity. And it fails, perhaps oversimplified, because the identity requires affirming the narrative in the first place.
You made an alliance with the side which silenced people. Period. Now you are just tapdancing around it. Are those who shut people down ever the right side? Especially in science?! Isn't that the usual characteristic of the dark side? :-)
I don't understand this "alliance" charge. It's common for free-speechers to be accused of the idea that by defending speech rights even for e.g. Nazis, they are effectively allying with them. Are you doing some sort of mirror version of this, that by saying e.g. Nazis deserve no intellectual respect and it's a downright evil ideology, that's effectively allying with those who want to censor them? That latter idea actually comes up sometimes, it's a branch of the whole debate between pro- and anti- free speech advocates. Some free-speech supporters are reluctant to ever say "This idea is valueless", because then censorship supporters will reply "Then you admit censoring it won't be intellectually harmful". My perspective on this is to rebut that the latter doesn't follow from the former.
(Nothing I have ever said indicates a demand that you should respect opinions you disagree with. Opinions are dime a dozen and many are stupid or harmful. It makes sense to disrespect them based on merit.)
Well, let me, just for the sake of argument, run with the Nazi imagery since you insist. With apologies to all public health people; I in no way see them this way.
What I see is the free speecher allied with the Nazis not by defending their free speech (which is right) but defending their censorious and other actions in the past. Saying the Nazis did nothing wrong in the past, and their critics are just malicious.
--
Another view to look at it is this: You think that vaccine critical people are just evil. Then *we* are like the Nazis and you as a free speecher should defend our right to say whatever we say, while you disagree with the content of those misled or evil opinions. Instead, you defend not us but those who silenced us. In effect, you side with and defend those who would silence the neoNazis marching through Skokie, not the other way around.
Thank you! This was a point always emphasized in our education as program evaluators--that even the most technically accurate data is useless at best, dangerous at worst, if it is not communicated clearly enough to inform timely, effective decisions.
With health information and disinformation traveling at the speed of light--sometimes with catastrophic consequences --health communication skills are more crucial than ever.
(As an aside, I too have turned down potentially lucrative opportunities in my area of interest. I would rather continue to volunteer my skills than sell false hope).
Yes, transparency gets punished. Think of the information provided on the back of a shampoo bottle. There are a myriad of websites and social media that attack the individual ingredients without understanding it's the mixture of different ingredients that helps mitigate their concerns. Instead, we now have sulfate-free and preservative-free and paraben-free and salt-free, all completely unnecessary. Preservative-free is especially dangerous because personal care products are not food and they do not get consumed as quickly as food does. Preservatives in these products are essential to their safety.
It's not the transparency that's the problem, it's the misinformation that is perpetuated for clicks and likes. Fear-mongering makes money and sadly devalues the honest critics and the good criticism that really does keep for-profit companies more in touch with consumers, their needs, their fears and their desires.
Absolutely spot on. To date, the emphasis has been on publishing research papers - which although important, is nearly invisible to the public (and has its own credibility problems). There's rarely an effort to communicate value and meaning apart from investor/corporate presentations, which also have their bias and limited audience. We've given misinformation the internet and every communication tool, and almost nothing to effective valuable science communication. Thank you, retired research scientist.
I couldn't agree more. Scientific publishing is nearly invisible to the general public - and it seems as if all scientific communication to the public is about generating products and/or maximizing shareholder value. Unfortunately the selling of supplements to cure everything from Alzheimers to cancer has also spread like wildfire.
My sympathies on the funding issue in particular. As far as I can tell, the most significant factor is the amount of funding. And as you point out at length, that's tiny. Misinformation has a business model, true information is a public good. I just have no idea what to do about it.
Science illiteracy cannot be remedied by post hoc communication no matter how well done. Unfortunately, having an illiterate public is extremely lucrative for certain people. For others it is an important foundation of social and economic inequality. For many powerful interests this is a desirable. While these values prevail (as they have through government capture) science communication will remain underfunded and deliberately marginalized.
Science illiteracy is NOT the problem. We cannot expect every citizen to understand science nor do we need them too. Lack of trust in official sources is the problem. As long as our regulatory agencies remain conflicted and/or captured due to receiving a large portion of their funding from industry, they will be considered untrustworthy by much of the public.
I absolutely agree that we cannot and should not expect everyone to understand the science. That being said, when institutional trust fails, where do people turn? If science communicators can fill even a bit of that void in trust by giving people the tools to feel empowered and learn for themselves, that’s worth funding, no?
I agree, not everyone needs to understand science, but I do think that everyone should have an appreciation for science, and how the scientific process has improved all our lives. I think that science education -particularly biological science- education needs to be improved. While I would never expect everyone to become a molecular biologist, I do think that everyone should understand enough to trust the experts in the scientific and medical communities. At the moment, I hear a lot of comments like "they got it wrong during covid, so why should I trust them now?"
I think we need to do better at explaining that science is a process - sometimes a slow one at that - not a priesthood.
I agree that lack of trust is a problem but disagree with how you interpret government capture. Regulatory agencies are funded through fiscal appropriations—through taxes. They do not receive money from industry. The “capture” occurs in the legislative process where corporate lobbying dramatically affects the regulations that agencies enforce. “Capture” also occurs in court decisions when the government is unable to defend the public interest (or declines to do so because of capture) and that role falls to privately funded non-profits. Ultimately this goes back to legislative and executive decisions limiting the power of regulatory agencies to protect public interest. More recently regulatory agencies have been hobbled because of slashed workforces. The capture occurs in legislatures, not in the agencies themselves.
We DO need an electorate that is educated in basic science. Take water for example. Arsenic is naturally occurring in many watersheds. It is not harmful at naturally occurring levels. But if the public does not understand what parts per
million or parts per billion mean in everyday life then people will not understand their own municipal water quality reports. They cannot make informed decisions about acceptable contaminant levels and unacceptable ones. That ignorance leaves people vulnerable to manipulation and fear mongering.
Effective communication—on any topic—requires shared understanding of basic concepts. It requires a shared basic vocabulary. In science and health communication people need to agree on how the fundamental scientific process works. People need to understand what different kinds of evidence mean and how they are used. Normally that is taught in fifth grade but it is very obvious that many people misunderstand or have forgotten what they were taught.
This is what I meant by scientific illiteracy. Not everyone is going to take advanced human pathophysiology and they do not need to. But people do need to know how to formulate reasonable questions to make “doing your own research” meaningful.
The scientific process cannot provide answers to every question for very clear specific reasons. When people do not understand that they often ask unanswerable questions. This leads to unnecessary frustration. Simply not knowing that their questions cannot be answered in the way they are posed (but could be answered with reframing) leads people to mistrust rather than just misunderstanding. That is a normal emotional response. Unfortunately this is happening on an enormous scale with serious public consequences. People’s emotional vulnerability makes them easy targets for manipulators. At that point the task is not clear scientific communication but substantial re-education which is quite different from communicating with even a modestly well educated public.
Good points. I'm curious if you have an example of for "unanswerable questions" and reframing?
We agree on a lot but I'm afraid you are mistaken about the funding of regulatory agencies. Pres. Reagan started a policy of making industry help to fund their regulatory agencies by charging fees, a change that has led to regulatory agencies regarding large corporations as their most important customers. Within the FDA, 45% of their budget is funded through fees from industry users.
https://www.fda.gov/media/143704/download
Interesting. It will follow up on that. I remember the rationale for having companies support the regulatory agencies but I didn’t connect it. I worked in a completely different regulatory environment at the state and federal level. There are fees in environmental and cultural compliance but they are most similar to court filing fees. They are small. Generally companies pay contractors for doing the work which is separate from the agency. Ironically, it is the taxpayer who has to pay for remediation, generally speaking. Polluters and looters walk away. Obviously this is completely different than the FDA.
You are right in that science has lost the public trust. There are many reasons for this. I do also think that science literacy (or the lack of) contributes to this. Science has become so complex, and talking with my non-scientists friend and neighbors, they tell me that it all sounds like science fiction. I think that we have failed, as a nation, to properly educate our kids about science -especially biology-, its strengths and limitations, even how to interpret objective facts. I'm not sure how, at the moment, but I aim to restore the public's trust in biomedical science.
Well not everyone can be a scientist, what's missing is critical thinking and discernment. People believe what feels right or what fits their narrative or view of the world. People need to learn and value open-mindedness and curiosity. Instead we have a lot of sheeple.
Of course most people will never work as scientists. But people do need to understand how scientific claims are made and what they mean and don’t mean in a broad way. Scientific procedure has a definition. It can answer some questions but not others for clearly defined, specific reasons. Knowing those things is part of scientific literacy. When significant numbers of people believe that humans coexisted with dinosaurs, though, we have a bigger problem. (No, I do not mean birds.)
Question: Do you think people on the pro-vax side or the anti-vax side are "sheeple" or would you say that it depends on how they arrived at their position?
Although people on the anti-vax side are completely wrong, I would not call them "sheeple". I think the average person there has fallen for a deliberate malicious lying campaign, designed to prey on their fears and weaknesses, by professional liars who are doing this for power and influence. I have nothing but disgust for the professional liars. I call them in particular "evil", and I use the word deliberately. But I don't condemn the victims of the professional liars for not being perfect reasoners. Someone who gets taken by a scammer is not a "sheeple", they're just human.
You've hit upon what I like to call "the trifecta" of our modern day science institutions - effective communication, translation of science into products and policy, and funding. These are all interrelated, and critically important.
With misinformation travelling faster and farther than actual facts - communication becomes ever more important. Unfortunately, I think that we scientists need to become better at connecting with non-scientists and explaining things in more concrete terms. I know that I personally find it hard (years of training is hard to undo) to talk in terms of absolutes rather than probabilities. The general public likes absolutes - "this is 100% safe" not "the risk of side effect is very very low".
Because of this, funding is sometimes precarious, often tied to the whims of political discourse - those talking points that are devoid of the nuance that actual scientific understanding requires - and the policy positions that inevitably follow.
In today's world, effective scientific communication is more important than ever.
Excellent analysis. None of these problems are new at all, but I think we're really seeing the consequences of them coming home to roost in the past few years. Which means that the need to address them is even more urgent than ever.
Thank you for explaining that health and science communication is an evidence-based field of expertise. I appreciate that you have the expertise to know how to effectively present information, but also when and what needs to be presented. Thank you for your good work.
You make your case very well. I hope to see all of your “wish list” come to be.
I’m seeing a parallel with Dr. Offit’s brilliant piece today on the anti-vaxx crew’s weaponization of the transparency in vaccine package inserts, where even statistically insignificant side effects must be revealed. When someone wants to see something in a negative light, they will. Nevermind that the supplements they take don’t even have clinical trials to begin with. Different standards for different people/products all the way around.
First prosecute and imprison everyone involved in 2020, from Mecher and Kadlec to Fauci and the hundreds of local "public health" officials who enthusiasitically enforced the torture chambers. After those monsters are in prison, then we might listen.
Well, that's a feeling! :-)
I guess many of my articles are doing a deep dive on this exact same?
A good post with very valid points. What do you think of this substack looking at the problem from a different point of view?
https://madhavasetty.substack.com/p/a-large-percentage-of-the-public?utm_source=post-email-title&publication_id=1279410&post_id=196066746&utm_campaign=email-post-title&isFreemail=true&r=6x5i5&triedRedirect=true&utm_medium=email
Some parts of what was said .. that a large part of the public ( in the USA) does not trust vaccines, i agree with and I think this is really important to address. However, this is tricky... in my discussions with "vaccine skeptics" I encounter a lot of simply mistaken views. (eg the view that vaccines haven't been tested). Many of these views can actually be checked easily, but people don't check them, and don't seem to respond well to simple facts.
There are certainly issues that should be addressed and are complex... the role of funding and the potential for "industry capture" of the regulatory systems. i don't think those are easy issues to deal with.
No, we vaccine skeptics believe they haven't been rigorously tested against a placebo. And that the health of vaccinated vs unvaccinated children has not been rigorously compared over a long period of time. Are we wrong?
so, what is an example of not rigorously tested against a control?
I said "placebo."
Tell me. Are we wrong?
Well, we're getting into territory of the joke "Parachutes have not been tested in a double-blind randomized-controlled trial. Before sending further money to Big Fabric, parachutes must be tested to the gold-standard of evidence-based interventions.".
But actually taking it further: "Why are you opposed to this parachute-testing research? Will you admit that some engineers have said wrong thing about how parachutes work? And parachutes clearly don't prevent all injury, some people using them have still ended up with twisted ankles, broken bones, even spinal injuries. But someone said parachutes make for a soft landing. THEY WERE WRONG! WRONG WRONG WRONG! - so very *WRONG*!! DENOUNCE THEM!!! How can we trust recommendations for using a parachute when engineers won't immediate confess to telling such "noble lies"? The whole profession must stop being so arrogant, and give respect to the anti-parachute perspective."
i would say you have misplaced concerns on this. see my longer note.
erin, "control group" is the important word. A placebo is a specific type of control. If we compare unvaccinated populations against vaccinated populations as was done with smallpox, measles & polio, you are really comparing "the thing we want to compare" - how do unvaccinated people do compared with vaccinated people.
There are reasons to use placebos, though - for instance if you believe people will behave differently if they know their vaccination stautus... also, you MAY be able to distinguish reactions reactions to vaccines from "ordinary" events.
Working scientists think seriously about these issues.
That makes sense. What I have heard is that the latter day vaccines are not compared to placebo in testing, but rather are compared to prior vaccines, which seems to seriously skew the situation. Also, that while in the past, vaccines were recalled if a few people died, in covid widespread injuries and many deaths did not lead to stopping.
There is also concern in the vaccine skeptical camp that vaccines are being overdone, esp. in chiildren. Viz the situation where every brand new newborn is jabbed with Hep B in America, and side effects are discounted and minimized.
Have their been rigorous long term studies comparing the health of vaccinated and unvaccinated children? My sense of it is that the whole vaccination paradigm went off the rails -- if some vax is good, more and more must be better. That sort of a thing...
I really would like to know. You likely know far more than I about this. If I have it wrong, please show me.
There really is a huge amount of material out there on this topic. Some of the original scientific reports are "pretty" readable, but I have to warn you, this does require pretty serious effort on your part to read these. Here is an example (you'll have to look it up) - this is about the trial of Measles vaccines in Britain in the 1960s (these trials were done after the Americans had actually made & tested Measles vaccines). But the British tested as well.
Vaccination Against Measles: Clinical Trial of Live Measles Vaccine
Given Alone and Live Vaccine Preceded by Killed Vaccine
Second Report to the Medical Research Council by the Measles Vaccines Committee*
Brit. med. Y., 1968, 2, 449-452 (this is the British Medical Journal)
Try this as the link:
https://www.jstor.org/stable/20392721
A bit of the text:
"In the autumn of 1964 a large-scale trial of measles vaccines
was begun in Britain under the auspices of the Medical Research
Council's Measles Vaccines Committee. The trial was planned
to assess the value of the vaccines for general use, and special
attention was therefore paid to the degree and frequency of
reactions occurring after vaccination and the ability of the
vaccines to protect against measles.
A preliminary report of this trial covering the six months
after vaccination has already been published (Medical Research
Council, 1966) and gives details of its general plan. The trial
was arranged in 32 areas and more than 36,000 children, in the
susceptible age group of 10 months to 2 years, took part. Two
immunization procedures were investigated-a single dose of
killed vaccine followed one month later by live vaccine, and live
vaccine alone. The killed vaccine was prepared by Pfizer
Limited from the Enders-Edmonston B strain, and the live
vaccine by Glaxo Laboratories Limited from the Schwarz
strain. The children were allocated by an effectively random
process to the three groups: (a) killed/live vaccine (b) live
vaccine, and (c) no vaccine...."
I appreciate your effort to understand this stuff. It will be a lot of work, and I can not blame you if you get tired of looking at these articles.
Good stuff, thank you.
I think the key (false) part is here:
"In order for real reform to occur, individual medical professionals will have to signal their disapproval around the present recommendations and vaccine safety testing. There is simply no way around it. This means they have to wake up from their slumber and confront the reality that they have been misled for decades."
Misled for decades??? The sort of program of building trust just doesn't work, because it doesn't address the problem of the fundamental demand of the anti-vaccine side: Confess public health supposedly engaged in a huge conspiracy and cover-up, and the outrage-mongers *caught* them.
They keep saying this is what they want. There's no way around saying they're wrong, which is info-dump, etc.
I think that the risks of vaccines have been underestimated for decades. For starters, the stated risks don't include the risks from manufacturing or administration errors under normal use rather than the trials run prior to approval.
I don't think this post was about reaching the professional anti-vaccine side or outrage mongers. It's about connecting with the public making choices about which vaccines to get for themselves or their children. When the pro-vaccine professionals consistently provide underestimates of the risks of vaccines that will need to be acknowledged before the measures of public trust in them will go up instead of down.
"I think that the risks of vaccines have been underestimated for decades."
Indeed.
I don't mean the professional anti-vaccine side. I mean the people who have been victimized by the professional anti-vaccine side. Look at what you said: "that will need to be acknowledged before the measures of public trust in them will go up instead of down" - is this any different in substance (not tone) from what I characterized as "Confess public health supposedly engaged in a huge conspiracy and cover-up, and the outrage-mongers *caught* them"? Over and over, I see anti-vaccine commentators saying some variation of this. I'm just at a loss. I want to scream "THIS IS COMPLETELY NUTS! It's sheer gibbering insanity, a complete pack of lies you've been sold by some of the most evil people in media." (the idea that every single country in the world has covered this up, *for decades* yet, is utter lunacy). But I know I'm not supposed to do that, and worse, it'd probably be counter-productive. But I can't see anything that actually works. Wishful thinking about planting-a-seed ignores that it's barren ground.
Yes, there is a substantial difference between asking for acknowledgement of past failures to provide accurate assessments of the risk versus claiming that there is a "huge conspiracy and cover-up". I agree that the idea of a world wide conspiracy for decades is utter lunacy. Unconscious bias leading to a systemic problems remaining unaddressed by professionals is not.
Thanks for the reply. But, well, is the general claim then about incompetence rather than malice? Hanlon's Razor - "Never attribute to malice that which is adequately explained by stupidity"? Still, doesn't the claim necessarily involve every government's public health department, over *decades*, failing to notice the alleged problems? And isn't there a "catch-22" here, in that to maintain "no, this didn't happen, it's just wrong" is not doing the demanded acknowledgment?
No, it's not a claim about incompetence rather than malice. Everyone can be doing their job perfectly well, but if the system is not designed to catch certain types of problems, they will exist until a concerted effort to improve is made.
I'm not sure what 'demanded acknowledgement' you are referring to, but if you mean my statement needing to acknowledge the underestimate of the risks of vaccines from the consumer's point of view, I must point out that you can't truthfully make the statement that this didn't happen. The testing and analysis of vaccine data is tilted to the manufacturers needs, not the consumers. All consumers can do if vote with their feet and decide against getting vaccines. Which is what you want to change, correct?
I can make no demands of you or anyone else on this matter. I am only pointing out what I think will be required for the health care professionals to persuade more people to get their vaccines. If you choose to insist on claiming the data and its analysis cannot be questioned because "this didn't happen, it's just wrong", then public trust will continue to degrade.
Nope, all we want is the admission that wrong moves were made during covid. And we can't even get that. I was thinking about my previous exchange with Seth, where his perpective was "admit nothing, make excuses all the way". -- That is a much smaller ask than demanding confession of some conspiracy.
Seth has divided loyalties. He is radically pro free speech, yet made his alliance with people who denied free speech to dissenting doctors and others. Bah humbug. Even if all the dissenters were "cranks and liars" as he suggests elsewhere, don't those people deserve free speech too?
Erin, as a free-speecher, I would oppose such things as "medical misinformation" laws. But that is entirely different from having an intellectual respect for anti-vaccine beliefs. Indeed, it's standard to support the rights of Nazis and KKK'ers, while at the same time vigorously opposing their ideology (sort of what free speech is about) - and not in any "Both Sides" way. Truth is NOT in the middle between Nazis and e.g. Jews.
For the rest, I can just repost what I wrote earlier:
It would be absurd to claim any field is error-free. Of course when dealing with a new disease causing a horrible worldwide pandemic, scientific understanding changed over time, and some initial perspectives turned out to be wrong. However, that's completely different from the anti-vaccine narrative. Well-intentioned people doing the best they can under difficult circumstances (my view), isn't in the same universe as the fantasies of the right-wing fever-swamp.
Consider again where I wrote about the trap of being "bludgeoned with every Holocaust Denier talking-point (errors in survivor accounts, confusions in identifying former camp guards, mix-ups in records, etc), with the tiniest mistakes morally equivalenced to some of the most vicious lies ever told. The Holocaust Denier can then proclaim how people can't be expected to ever again trust the History Elites, unless maybe historians repeatedly grovellingly apologize to the Deniers, and grant them intellectual respect. Fundamentally, it's a demand for validating the whole grievance narrative and persecution complex that's been fabricated by hate-monger lie-machines."
That is, I would consider it unreasonable to claim that Holocaust Denial is caused in any part from historian's reputation "ruined by their own missteps". And the analogy is valid since it's the same playbook: Find some mistake somewhere, build huge lies on it, when called on the lies, point to the mistake (and then cry martyr).
I'll repeat that I see the appeal of the subtext: "That arrogant Establishment, they were lying to us, but we *caught* them. Our people-powered movement showed how those Elites, with their fancy-shmancy big-words college stuff, were no match for our just plain folks common-sense. [Buy our special merchandise]"
And that brings me back to where "communication" doesn't work. Once people form that sort of narrative, they don't give it up easily, if at all. If it's about of identity, facts basically don't matter. But a big mistake I think runs through this idea is that you can somehow work on the identity. And it fails, perhaps oversimplified, because the identity requires affirming the narrative in the first place.
You made an alliance with the side which silenced people. Period. Now you are just tapdancing around it. Are those who shut people down ever the right side? Especially in science?! Isn't that the usual characteristic of the dark side? :-)
I don't understand this "alliance" charge. It's common for free-speechers to be accused of the idea that by defending speech rights even for e.g. Nazis, they are effectively allying with them. Are you doing some sort of mirror version of this, that by saying e.g. Nazis deserve no intellectual respect and it's a downright evil ideology, that's effectively allying with those who want to censor them? That latter idea actually comes up sometimes, it's a branch of the whole debate between pro- and anti- free speech advocates. Some free-speech supporters are reluctant to ever say "This idea is valueless", because then censorship supporters will reply "Then you admit censoring it won't be intellectually harmful". My perspective on this is to rebut that the latter doesn't follow from the former.
(Nothing I have ever said indicates a demand that you should respect opinions you disagree with. Opinions are dime a dozen and many are stupid or harmful. It makes sense to disrespect them based on merit.)
Well, let me, just for the sake of argument, run with the Nazi imagery since you insist. With apologies to all public health people; I in no way see them this way.
What I see is the free speecher allied with the Nazis not by defending their free speech (which is right) but defending their censorious and other actions in the past. Saying the Nazis did nothing wrong in the past, and their critics are just malicious.
--
Another view to look at it is this: You think that vaccine critical people are just evil. Then *we* are like the Nazis and you as a free speecher should defend our right to say whatever we say, while you disagree with the content of those misled or evil opinions. Instead, you defend not us but those who silenced us. In effect, you side with and defend those who would silence the neoNazis marching through Skokie, not the other way around.