Who Decides?
In recent months we have increasingly encountered what seems to be both a philosophical and a practical question: how do we distinguish scientific dissent from misinformation? Central to Critica’s mission is to “counteract misinformation about science and health” and we are now vigorously engaged in projects to do just that when it comes to COVID-19 and the vaccines that protect us from it. Yet, there have been from time to time concerns raised that too robust a response to misinformation might be stifling something that is at the heart of scientific progress: the ability to dissent from established wisdom when new data or new interpretations of existing data become relevant.
Several social media platforms now have policies to censor misinformation about COVID-19, something generally applauded by the public health, medical, and scientific communities. If someone posts a statement like “COVID-19 vaccines cause more deaths than COVID-19” we recognize the statement as clearly wrong, worry that it might discourage people from getting vaccinated, and generally agree that it should not be spread on the internet. Remember that we are not talking about the First Amendment here—that only applies to government censorship of speech. Private companies like Facebook, Twitter, and Pinterest have the right to erase whatever they want from their platforms and we encourage them to do so when a post might harm the public’s health.
Not everything is as clear cut as the above statement, however, or at least not immediately so. Remember when hydroxychloroquine was first touted as a potential treatment for COVID-19? The idea that hydroxychloroquine might work against the virus that causes COVID-19, SARS-CoV-2, is not a far-fetched one. The drug has activity against the organism that causes malaria, in part by blocking entry of the malaria pathogen into human cells. In the laboratory, hydroxychloroquine apparently had some similar activity against SARS-CoV-2. So talking publicly about this possibility was at one point entirely reasonable.
It turns out that SARS-CoV-2 enters cells through a mechanism that a drug like hydroxychloroquine doesn’t block, so for biological reasons it turns out not to be a drug that will be effective against COVID-19. Indeed, clinical trials showed that hydroxychloroquine does not work in COVID-19 and saying it does so is now considered misinformation.
At what point did openly discussing hydroxychloroquine as a treatment for COVID-19 move from a matter of legitimate scientific discourse and something the public had every right to hear about to a case of misinformation? While clinical trials were being conducted and reported, there was a period when there were also differences in how scientists interpreted the emerging database so that at first it was perfectly reasonable to speculate that the drug might work. Clearly, we don’t want to stifle that kind of discussion because it is exactly the process by which scientists ultimately come to consensus about anything under investigation. Studies are done, scientists point out shortcomings in those studies and call for more studies, differences in how data are interpreted are worked out as more data come through, and finally a conclusion is reached, one that stands (or should stand) only as long as no new data emerge to challenge it.
If at some point a scientist wants to post on Twitter a comment like “I don’t think the data of such and such a study clearly show that hydroxychloroquine is ineffective for COVID-19 and I want to see another study done with a different dose given at a different point in the disease course,” then we would probably not want to see that comment censored. Debated maybe, but not erased. True, such a Tweet would engender the risk that retweets and journalists’ stories about the tweets would be interpreted by the public to mean the drug actually worked, but that would be the price we would need to pay to be sure that scientific dissent is allowed to flourish.
On the other hand, to articulate now in any public forum that hydroxychloroquine is a treatment for COVID-19 would be to spread incorrect information that could potentially cause harm. It doesn’t work for COVID-19 and taking it for this purpose only puts one at risk for potentially serious adverse side effects. We now have sufficient clinical trial data and the guidance of respected health organizations telling us that hydroxychloroquine isn’t to be prescribed for COVID-19. We would have no problem with a social media company electing to censor a statement claiming efficacy for the drug from its platform.
Dissenters Are Sometimes Successful
One can of course look throughout history to find many instances of a lone individual or small group who valiantly opposed established scientific dogma, ultimately to be proven right. We all love to cite the examples of Copernicus and Galileo, for example, whose recognition that the earth orbits the sun was initially suppressed. Those two scientific heroes persevered in their dissent nevertheless, ultimately of course proving to be right.
More recently, we’ve seen that decades of adherence to the notion that cholesterol is a major dietary cause of cardiovascular disease was slowly overturned, but only after small groups of naysayers were able to persist despite opposition in showing that the data really implicate processed foods and sugar as the principal offending agents. A combination of industry interests and organized medical organizations promoted the incorrect idea about cholesterol for generations, suppressing the data that sugar and not cholesterol is really the most seriously deleterious dietary component for heart health. How fortunate we are to have people willing to oppose these organizations despite all their power in the medical arena.
This means, however, that almost anyone with a contrarian view can declare themselves to be the repository of truth, create an image of a lone warrior courageously standing up to the establishment, and gain attention for ideas that are plainly wrong. The community of experts in infectious diseases, for example, explains that Lyme disease is caused by a microorganism that is highly sensitive to antibiotics, making ongoing infection after an adequate course of medication very unlikely. Against that established wisdom, which is based on convincing science and expert consensus, is a group who insist that “chronic Lyme disease” is a common condition requiring prolonged administration of antibiotics. In order to protect people from the adverse consequences of being treated with medication for a condition they do not have, infectious disease experts might wish that mention of “chronic Lyme disease” be categorized as misinformation and removed from the internet. Advocates for “chronic Lyme disease,” however, would undoubtedly rail against such a media policy and declare it suppression of legitimate scientific dissent.
The Very Public Pandemic
Today we see this tension play out all too dramatically with COVID-19. This is a very public pandemic in which every scientific twitch is immediately reported through multiple media channels. Someone somewhere says something might be effective in preventing or treating COVID-19, be it vitamin D, ultraviolet light, ivermectin, or convalescent serum, and millions of people around the world hear about the potential “breakthrough” almost instantly, often then deciding to either purchase the treatment or try to find healthcare providers who will prescribe it.
Once again, there is the sense that we cherish this kind of transparency. If something really turns up that is effective in preventing or treating a potentially deadly illness like COVID-19, we want the public to know about it right away. We saw clearly during the early years of the AIDS epidemic that public advocacy can play a critical role in ensuring that effective interventions are developed and disseminated. Research that remains cloaked behind government bureaucratic walls or known only to scientists cannot benefit sick people.
And yet, we have seen over and over again that in the service of transparency one ineffective intervention after another for COVID-19 has reached the public’s attention. There is insufficient evidence to recommend ivermectin as a treatment for the illness and taking vitamin D (unless possibly if you are clearly vitamin D deficient) won’t prevent you from getting it. To the extent that believing in these things as prophylactics or remedies for COVID-19 replaces taking the steps actually known to reduce viral transmission, like wearing face masks, social distancing, and, especially, getting vaccinated, then broadcasting that they work is potentially harmful and a form of misinformation.
The Ideal Remedy
In the ideal world, the public would be informed by carefully worded stories about research developments that scrupulously delineate what has been shown not to work, what is still in the hypothesis testing stage, and what has achieved scientific consensus as a useful intervention. The authors of these stories would be people who themselves understand the science and are versed in scientific methodologies and who check with experts before making statements about the status of various proposed interventions. A scientifically informed public would then read these stories, understand different levels of scientific progress, know when it is time to pressure elected officials for more research funding in an area, and also grasp when it is time to embrace a treatment and when it is time to wait for more data.
We are, of course, far from that ideal, leading to calls for social media companies to police their platforms more assiduously and to remove misinformation when it threatens the public’s health. That in turn leads to accusations that social media companies are either doing a terrible job at managing content and therefore enabling misinformation or that, on the other hand, they are suppressing scientific dissent and legitimate debate.
We try at Critica to follow scientific consensus carefully while at the same time being open to new ideas and data that might challenge that consensus. Yet we hardly position ourselves as the ultimate arbiter of what the public should see when it comes to health recommendations. We don’t think the companies that run Facebook, Twitter, or YouTube are necessarily the right institutions to make those decisions either. At the same time, we think it was fairly obvious when something like recommending hydroxychloroquine to treat COVID-19 went from a matter of legitimate scientific conversation to misinformation and we very much want people to be protected from latching on to ineffective treatments that offer only adverse side effects.
There are sources that are usually reliable to help us make the determination of what is scientific dissent and what is misinformation. We believe that we can generally rely on consensus statements from medical associations and on guidance from federal agencies like the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and the Food and Drug Administration (FDA). But these are clearly not above reproach. Consensus statements take time to formulate and may not be created in time to help us make decisions during crises like the current pandemic. Moreover, the panels that make up treatment consensus statements have been criticized on conflict of interest grounds because many of their members often receive money from the same pharmaceutical companies that make the medications included in the consensus statements. With respect to federal agencies like CDC, NIH, and FDA, all are bureaucracies that can be slow-moving and occasionally subject to political interference.
What is desperately needed, then, are independent scientific agencies composed of experts with no financial ties to industry, capable of responding rapidly to emerging evidence and making informed recommendations that can be trusted by both professionals and the general public. Creating such agencies would be a challenging task. A funding mechanism would need to be created that would ensure financial stability and independence from political and industry influence. Experts willing to participate who have no competing interests would have to be found. The public would have to be reassured that the guidelines offered by these agencies are reliable and based solely on available data.
The COVID-19 pandemic has taught us how vulnerable we are to misinformation and how much clear, reliable sources of information are needed. We recognize that what we are calling for is a very tall order, but it seems clear that we deserve and need something close to it.
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