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Breaking Down the Anti-Vaccine Echo Chamber

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The rhetoric around vaccination is generally black and white: vaccines are good or vaccines are bad. But now more than ever, it’s important to find ways to communicate across the vaccine echo chamber. Photo: Bill Smith/Flickr CC

The rhetoric around vaccination is generally black and white: vaccines are good or vaccines are bad. In these days of Facebook and Twitter, it is easy enough to block out the opinions of those you disagree with, and only associate with people whose voices reinforce your own opinions. These echo chambers have real-world implications; currently, the U.S. is in the midst of its largest measles outbreak in decades. That’s why it’s important to find ways to communicate across the divide.

While the overwhelming majority of the scientific and medical communities (including the authors of this article) agree that vaccines are extremely safe and effective, and that the benefits far outweigh the risks, it is important to note that there have been, on rare occasions, events where certain vaccines have been recalled, and there are very rare occasions when anaphylactic events can occur after vaccination. Failing to admit that these events can occur fuels the anti-vaccination community further in their dangerous rhetoric and pushes them deeper into the echo chambers that exacerbate vaccine denialism. It is important for vaccine advocates to stop completely discounting these fears as impossible and to reframe their argument in a way that acknowledges the fears but underscores the importance, efficacy, and safety of vaccination on the whole, despite the risks.

Many who are on the fence about vaccination are worried about the potential consequences of vaccines; they’ve heard stories about children having severe immunologic reactions or dangerously high fevers after their shots; they’re enticed by anecdotes about children who were vaccinated one day and severely impaired the next. Most of these stories come from a misunderstanding of the common scientific axiom, “correlation does not equal causation,” and carry little to no weight in arguments against vaccinating. Many of the stories are also lies fabricated by the most vocal vaccine deniers and profiteers seeking to further their own dangerous agendas.

But every once in a while, a story will carry some legitimacy, and it does vaccine advocates no good to dismiss them as impossible. Instead of outright dismissing the claims, it would benefit the pro-vaccine community to acknowledge that sometimes, albeit rarely, mistakes occur, and to focus on what the scientific community does to ensure safety, how infrequent these events actually are, and how the benefits of vaccines still significantly outweigh the risks. In fact, when mistakes do occur, the products are removed from the market immediately and the kinks are worked out, further evidence that the system works well.

Vaccine advocates should feel comfortable with these conversations and instead of shutting them down; those whose fears are dismissed will look for another outlet to vent their frustration, convinced the medical community and government are engaging in a conspiratorial cover-up, and if they cannot find a place to have a civil discussion about it in an evidence-driven environment, they will often seek confirmation from those whose agendas are nefarious: enter the anti-vax echo chambers.

Many of these echo chambers — like Facebook’s “Vaccine Resistance Movement,” “Vaccine Re-education Discussion Forum,” and “Vaccine Truth Movement” groups, for example — have tens of thousands of followers. Where do they come from? Much of the blame can be placed on profiteers: those who seek to profit off the ignorance and fears of parents and others.

Andrew Wakefield, whose retracted Lancet article claimed there was a link between the MMR vaccine and autism, is a textbook profiteer who intended to profit from his own measles vaccine and treatment, for which he filed a patent application. Even after his medical license was revoked because of fraudulent, unethical methods and conflict of interest, he continues to profit from his hoax. In 2016, he and other big-name anti-vaccine profiteers directed the propagandistic documentary Vaxxed, which makes the same spurious claims as Wakefield’s original Lancet article and raked in almost $1.2 million.

Or consider Larry Cook, who runs a group called Stop Mandatory Vaccination. He has made almost $80,000 from anti-vaccination GoFundMe campaigns, which he freely admits go “directly” to his bank account and “may be used to pay [his] personal bills.”

Profiteers are responsible for gatekeeping many of the staunch anti-vaccine communities found on social media, where anyone who expresses an opinion contrary to theirs is attacked and banned from the group in order to keep the echo chamber as tight as possible. It is through these echo chambers that profiteers continue profiting; they sell their own books and alternative lifestyles and bankroll from GoFundMe campaigns. Any dissenting voice is a threat to their finances, so they encourage intense groupthink and mob mentality.

It is our goal as public health professionals—and should be the goal of every scientifically-minded, pro-evidence person—to keep those on the fence about vaccines as far away from the echo chambers as possible. Foresight is important: understand the commonly used tropes they may use, and know how to combat them with evidence and reason instead of shutting them down.

Unfortunate as it may be, it is on all of us to steer the conversation in the direction science has told us is safe and effective for decades. We must do what we can to prevent the echo chambers from growing.

Alter and Flattum-Riemers are recent graduates from the Mailman School of Public Health at Columbia University. Both are science communicators who focus on vaccine education and manage the vaccine-related content of the March for Science social media pages.

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5 years ago

Thank you for this. It’s the first article I’ve seen that addresses the in-between. There needs to be compassion in these conversations for people who have actually experienced adverse vaccine reactions. There are risks that need to be understood and accepted in order for parents to get on board with vaccination, but the lack of acknowledgement of the very real fear that this involves for some parents, and the shaming of those whose decisions reflect experience that has reasonably taught them to be cautious, sets up a culture of distrust and makes them less likely to get on board, not more likely.

Vaccine reactions happen and some of them are terrifying. Most of them are not permanently harmful, but when those fears and concerns are dismissed and downplayed instead of openly acknowledged and addressed, it is no wonder that some people become distrustful and opt out. I think it is absolutely essential to respectfully and thoroughly and openly address such concerns. I imagine there is a fear that if the risks are discussed, people will opt out, but I believe the opposite is true.

If vaccines are safe, we need to know what that really means. When my baby has a seizure after a vaccine, I want an expert to tell me why it is a normal response for some babies, how we know it is safe, why it is not harmful, how we know for sure that there is no lasting damage, how we can be sure it will not happen again and again and again every time I consent to a vaccination.

I am the parent whose doctor could not or would not explain this, could not assure me that it would not happen again, would not tell me how we know for sure that it is not something to fear. I am the parent who wanted to be reassured but wasn’t, and I gave up vaccinating when I didn’t get that reassurance. (My kids are caught up now, but it was a long journey with a lot of questions.)

Do I understand herd immunity? Yes. Do I believe in science? Yes. Do I want to do my part in protecting the vulnerable in our society? Yes. Do I want my child or any child to get sick with a terrible disease? No. Do I want my child or any child to suffer a vaccine reaction? No. Do I trust doctors? Not entirely. Do I trust the government? Not entirely. Do I trust the vaccine industry to be open about about the risks of the product they profit from? No.

Did being shamed and having my concerns dismissed inspire my trust and willingness to continue vaccinating? Of course not. I don’t think of myself as anti-vaccine or pro-vaccine. I’m just a mom who was traumatized by the real experience of a vaccine reaction and took a step back to try to figure it out. Anecdotal, but I have several friends whose children have also had vaccine reactions, at least two with devastating consequences. We have to acknowledge this. We have to talk about it. We have to address people’s fears with openness, truth, and compassion, or else the feeling that “they’re hiding something” and “they’re not being honest with us” and “we can’t trust them” – they being the doctors, the government, the vaccine industry – will continue to give people pause.

Anyway, the current shame-based campaign will deepen the divide on this issue. People who don’t vaccinate are not necessarily stupid or uninformed. It goes much deeper, and unless this enters the conversation, I think the campaign is doomed to fail.

Rachel Alter
Rachel Alter
Reply to  Amanda
5 years ago

Hi Amanda, thanks so much for the reply. I totally understand your reservations, given that your doctor was unable to answer some of your important questions. I strongly encourage you to join this vaccine group, an international, evidence-based forum filled with extremely knowledgable experts including physicians, nurses, scientists, epidemiologists, lawyers, and more. The group requires and enforces civility and for all claims to be backed up with credible evidence, so if you (or anyone else) have any questions at all, it’s a wonderful place to find some answers.

5 years ago

As soon as you cure autism, all this discussion goes away… just go focus on root-causing and curing autism, the true silent epidemic of our time; Cure autism, and all this discussion and mistrust goes away…

Margit Burmeister
Margit Burmeister
5 years ago

Thank you for this! In a March for Science open Facebook discussion, we had a heated debate about this article anyone can look at. Some there argue that nobody is denying vaccines have risk – nonsense, your article was needed! Like others here I feel we are too much in an antivax /provax camp. It feels like Trump or abortion – no middle ground allowed. In my opinion it does not go far enough. In particular, we need to argue numbers. For every anecdote of a kids coming down with horrible symptoms after a vaccine there are kids like the recent case who nearly died of tetanus. We have to move beyond anecdotes and to numbers, “Do the benefits outweigh the risks?” . Tetanus is a no-brainer: “severe problems (seizures, coma, brain damage, nerve problems, or severe allergic reactions) occur in less than one in 1 million vaccinations (and, my addition, death hence even more rarely)”, while the tetanus bacteria is literally everywhere, especially in healthy soil! And 1/10 infected dies, the rest mostly have a lengthy hospital stay and symptoms remaining. These are numbers, and there is hardly a vaccine where the indication is clearer. I don’t know the argument for or against each one of the vaccines but chickenpox is on the other side: There are only a handful of countries that recommend immunizing all kids against chicken pox – most well developed countries like the UK don’t immunize! The downside isn’t the side effects, its more complicated and has to do with chicken pox being worse in adults than in children, whether or not vaccines protect forever or only for 10 years… too much to explain, but it is an example where the science isn’t settled yet. Maybe it will settle on the vaccine’s benefits outweigh its risks, maybe it won’t. But we can’t just claim the US is so far ahead of the world – child mortality in the US is higher than in most other developed countries. We have to admit that there are ongoing debates in science. If we can state with clarity where there is no doubt, but admit where the science isn’t settled, and have the numbers to back it up, we become more trustworthy. The lack of trust in science and medicine is at the root of the problem with climate deniers and anti-vaxers, and as you say, honesty is key to change that.

Rachel Alter
Rachel Alter
Reply to  Margit Burmeister
5 years ago

Hi Margrit, thanks for your reply.

To be clear, there is no debate over the safety of vaccines; they are safe, and we know that. What we need to be careful of is saying they never have adverse events, because there are a few, albeit very rare, occasions when they can. Nothing you put in your body is 100% safe– there will always be risks and benefits.

In the case of vaccines, the benefits significantly outweigh the risks. But we do need to acknowledge that once in a while, there will be a case worth looking at. Doctors should not dismiss their patients’ claims immediately– chances are any assumed adverse events are due to a misunderstanding of correlation vs. causation, and that’s important to address.

As far as child mortality rates go, you really can’t compare them across countries; so many factors go into mortality rate that you cannot simply claim it is due to differences in vaccination schedules.

Again, to be clear, science is never settled, but it is asymptotic: we learn more and more and approach a point at which it may be considered settled, even though there will always be more to learn. That’s where we’re at with vaccine safety. Of course we’re always studying and learning more, but the safety issue is settled.

Elizabeth Duffy
Elizabeth Duffy
1 month ago

As someone with a degree in Microbiology who researches and writes about modern antivaccine movements, this is a great article! Vaccination discussions are often presented in quite a polarized way; that is pro-vaccine vs antivaccine. However, these are actually two extremes of a spectrum. In the middle are the vaccine-hesitant, or the fence-sitters you mention in the article. They may delay or reject some or all vaccines. It’s also important to note that there is no debate about whether vaccines are safe and effective – they are, without any doubt. There is, however, a discussion to be had about people’s perceptions of vaccines.

Last edited 1 month ago by Jeremy Hinsdale