Editor’s note: This is the third in a series of articles about trust in science. The first article explored the forces behind the credibility crisis and the second examined how communication about science can cause public confusion.
Lydia Greene was an unlikely person to turn against vaccines. She had worked as a quality control chemist at a pharmaceutical plant, aspired to become a nurse, and got a flu shot when she was pregnant. But when it came time for her two-month-old to get the vaccinations recommended by health authorities in Alberta, Canada, Greene grew anxious.
“My daughter was tiny” for her age, she says. “I thought, shouldn’t she be bigger [to get shots]? And if she has a bad reaction, there’s no taking the vaccine out of her body.”
Ascribing her feelings to the normal anxiety of a new mom, Greene and her husband moved ahead with the vaccinations. Their “happy baby” spent much of the next two days sleeping and wailing.
“I don’t think I’d heard her cry until that day,” Greene recalls. “She stopped nursing and wouldn’t open her eyes and look at me much. It was scary.”
After Greene got “brushed off” by a public health nurse whom she called for help, she turned to the internet. She found a mothers’ forum where people shared stories about similar reactions in their children and claimed that the vaccines are dangerous. She eventually stopped the inoculations for her baby and rejected them for her next two children as well.
Greene’s journey typifies the way that many people get drawn into communities that spew misinformation and intentional disinformation about such things as microchips in COVID-19 vaccines and climate change as a hoax. Her experience, which ends with Greene extricating herself from those communities, is instructive for doctors and scientists who wonder, “Why do people believe this stuff?”
“Myths are believable to many people today,” Ross McKinney, MD, chief scientific officer at the AAMC, said at a biomedical researchers conference in May. “The myth is equal to what is real.”
“Myth” is the apt word, because purveyors of misinformation and disinformation often succeed by telling stories. They employ falsehoods and twist facts to build tales for people who are anxious about an issue, confused by conflicting claims, and wary of answers from authorities. Although public attention fixates on conspiracy extremists who live in fact-free alternative realities, many if not most of those who accept these stories are what’s been called “informationally adrift.”
“Drowning in a sea of articles, videos, memes, and posts, they don’t have a firm grip on what to believe,” human rights advocate Suzanne Nossel, JD, explained in Slate.
Abbie Richards, MS, spends her days studying misinformation on TikTok and finds a common state of mind among many people who buy into the myths.
“Our willingness to believe misinformation often comes from a place of vulnerability,” says Richards, a research fellow at The Accelerationism Research Consortium (ARC), which studies movements to destabilize democratic societies. “You want a simple story to explain why the world feels messed up, or an easy fix for a chronic health condition. A lot of it comes down to powerlessness.”
Dismissive care sows doubts
Greene’s faith in medical authorities was shaken during her first pregnancy, in 2008, when she was 26. Her doctor said she had no choice but to deliver by Caesarean section, because her Crohn’s disease made a vaginal birth too risky for the baby. After the birth, Greene found credible medical literature showing that Crohn’s patients can have safe vaginal births when the disease is in remission, as hers was. She resented not being invited to discuss the options.
“A lot of pregnant women don’t feel like they have autonomy” over their own medical decisions, says Greene. “It all comes down to, ‘We know what’s best and if you want your baby to live, then you better do what we say.’”
Then when she and her baby struggled with breastfeeding, the doctor offered no practical advice but said, “If it doesn’t work out, don’t be so broken up about it.” Greene turned to a website where mothers share information and experiences, and “they were great. They gave me advice” that worked.
Looking back, Greene sees that “the door opened” for her to doubt the credibility of established medical professionals.
Feeling let down or dismissed by established institutions sometimes drives people to seek alternative sources for answers. Many of the informationally adrift “have been betrayed, lied to, or abandoned by institutions to which they once owed faith,” Nossel wrote.
One reason that more people might believe misinformation and disinformation of all types is that “trust in institutions is going down the tubes,” says Dominique Brossard, MPS, PhD, chair of the Department of Life Sciences Communication at the University of Wisconsin, Madison (UW).
While some of these people rail against certain institutions as completely untrustworthy, many focus their suspicions only on specific issues. The suspicions often develop during periods of anxiety about health matters, such as an illness that is not improving with standard treatments.
In a study of the factors behind the acceptance of health misinformation online, researchers at the School of Journalism and Communication at Renmin University of China found anxiety to be a significant force.
“Individuals who have higher levels of anxiety are more motivated to seek information to either legitimize their anxiety or to help them to ease the worry,” they reported last year. “Fear and anxiety can even reinforce people’s believability of false information.”
High anxiety makes people especially drawn to “negative information” and likely to share health misinformation, the researchers found.
Communities confirm suspicions
Greene’s anxiety about getting her daughter vaccinated seemed to be validated by the baby’s strong reaction. The response of the public health nurse, who told her “Your baby’s fine,” further upset her.
“She made me feel dumb, like the first-time mom who doesn’t know anything, like I was overreacting,” Greene recalls.
Greene returned to the online mothers’ forum, where she found confirmation of her suspicions that the inoculations were painful and might have made her daughter sick. After stopping the vaccinations, she explored websites that promote and sell various healing remedies as alternatives to conventional medicine. She bought their supplements and tried their suggested diets to control her Crohn’s disease.
Greene says she had entered “the echo chamber” of online communities where people reinforce each other’s opinions.
“People are drawn to these communities that distrust the health care system because they’re searching for answers,” says Timothy Caulfield, LLM, research director of the Health Law Institute at the University of Alberta, who studies misinformation campaigns. “Once they become part of the community, they slowly adopt that worldview.”
That worldview might involve “mistrust of the pharmaceutical industry because it’s all about making money, or mistrust of government,” says Brossard at UW.
Those communities provide what seem like clear answers for people who are anxious and confused. “Misinformation often offers very simple explanations for very complex problems,” says Richards at the ARC.
The explanations are often presented “in a compelling way,” she says. She notes that medical science discourse “goes back and forth trying to figure out what is true” — testing hypotheses, trying to replicate results, revising conclusions, and producing nuanced answers. “None of that is nearly as interesting as a 60-second video that promises to fix your diabetes overnight.”
Most consumers of these stories do not see themselves as anti-medicine or anti-science, say those who study the phenomenon, but as unpersuaded at times by mainstream scientific consensus, which is sometimes wrong.
“It’s not that people [who believe misinformation] reject science,” Brossard notes. “They’re going to find the science that supports their belief. They’re not always going to trust the science that we wish they would trust.”
That describes Greene, who felt comfortable with science overall. As a young woman she earned a diploma in chemistry from an institute of technology, then during early motherhood developed varying degrees of medical science skepticism depending on the issue.
“There’s a spectrum of [vaccine] hesitancy,” she notes. “I was as close as you could be to anti-vax,” but did not lecture others to forswear vaccines. “I believed other people should choose what’s right for them.”
Along the way she dropped her plans to become a nurse, because she didn’t have faith in vaccines she might have to administer.
Research prompts reversal
Ironically, the COVID-19 pandemic, which fueled so much misinformation and disinformation, gave Greene a reason to re-examine some of claims she had been following. She grew concerned that contagious diseases would increasingly spread throughout the population in the coming years and that health care systems would not be able to help everyone who got sick, including her children.
“What if our health care system is overwhelmed?” she thought. “Am I going to regret not having some basic vaccinations for my kids?”
Greene dug into the evidence about the dangers of childhood vaccines. She knew that one cornerstone of those claims was that elements in the vaccines could seep into and damage babies’ brains because their blood-brain barrier (BBB) — composed of cells that block microorganisms in a person’s blood from reaching their brain — is not yet fully developed.
Greene found no scientific research to support that claim and plenty of established research that debunked it. She learned that the BBB is fully formed early in embryonic development.
“I was verifiably wrong,” Greene says. “I had to consider that I was wrong about other stuff, too, and started to look closer and step out of the echo chamber.”
She came to feel that in some cases, she had been played for profit. The supplements she bought and diets she tried against Crohn’s had made her feel worse. Those who sell unproven products and services as alternatives to evidence-based medicine “are taking advantage of people when they are the most vulnerable,” Greene says. “It’s opportunistic. They hack into your fears.”
(“Alternative medicine” covers a broad range of products and services, such as acupuncture and yoga, that some people find helpful when used in consultation with their doctors.)
Greene didn’t just quietly change her mind. She and another former anti-vaccination mother launched a campaign designed for parents, Back to the Vax, to promote evidence-based medicine and debunk medical misinformation. The campaign includes web-based resources, a podcast, and webinars where health care workers can earn continuing education credits.
Greene is back to fully working with her family’s doctors, although she asks questions, presses for more information, and reads the applicable scientific literature. She got her children updated on their childhood vaccines, then their COVID-19 vaccines. And she is attending college to become a nurse.