From The New York Times
By Melinda Wenner Moyer
August 4, 2018
Americans who don’t want to vaccinate are increasingly getting their way: A June study found that, over the past decade, the number of philosophical vaccine exemptions rose in two-thirds of the states that allow them.
What drives these wrongheaded decisions is fear — fear that vaccines are somehow dangerous, even though research shows the opposite.
And, these choices have consequences. The 2015 Disneyland measles outbreak sickened at least 125 people, many of them unvaccinated.
As a science journalist, I’ve written several articles to quell vaccine angst and encourage immunization. But lately, I’ve noticed that the cloud of fear surrounding vaccines is having another nefarious effect: It is eroding the integrity of vaccine science.
In February, I was awarded a fellowship by the nonpartisan Alicia Patterson Foundation to report on vaccines. Soon after, I found myself hitting a wall. When I tried to report on unexpected or controversial aspects of vaccine efficacy or safety, scientists often didn’t want to talk with me.
When I did get them on the phone, a worrying theme emerged: Scientists are so terrified of the public’s vaccine hesitancy that they are censoring themselves, playing down undesirable findings and perhaps even avoiding undertaking studies that could show unwanted effects. Those who break these unwritten rules are criticized.
The goal is to protect the public — to ensure that more people embrace vaccines — but in the long-term, the approach will backfire. Our arsenal of vaccines is exceptional, but it could always be better. Progress requires scientific candor and a willingness to ask inconvenient questions.
Here’s a case that typifies this problem and illustrates how beneficial it can be when critical findings get published. In 2005, Lone Simonsen, who was then with the National Institute of Allergy and Infectious Diseases, and her colleagues published a study in JAMA Internal Medicine showing that the flu vaccine prevented fewer deaths than expected in people over 65.
“I had interesting conversations with vaccine people. They said, ‘What are you doing, Lone? You are ruining everything,’” recalls Dr. Simonsen, who is now a global public health researcher at George Washington University. Her work helped lead to the development of a more effective flu vaccine for older people, yet she felt ostracized.
“I felt it personally, because I wasn’t really invited to meetings,” she says. “It took a good decade before it was no longer controversial.”
It’s understandable for scientists to be nervous. The internet has made it easy for anti-vaccine activists to mislead. Dr. Simonsen’s study, for instance, inspired a story with the ridiculous headline “Flu Vaccines Are Killing Senior Citizens, Study Warns.”
But concerns over what these groups might do are starting to take precedence over scientific progress.
“Scientists’ perception of public irrationality is having an impact on our ability to rationally discuss things that deserve discussion,” says Andrew Read, the director of the Center for Infectious Disease Dynamics at Pennsylvania State University. Dr. Read studies how pathogens evolve in response to vaccines, and he is fiercely pro-vaccine — his goal is to keep the shots effective.
He says he has had unpleasant encounters at scientific conferences; colleagues have warned him, for instance, not to talk too openly about his work. “I have felt the pressure — and for that matter the responsibility — acutely,” he says.
In 2009, Danuta Skowronski, the lead epidemiologist in the division of Influenza and Emerging Respiratory Pathogens at the British Columbia Center for Disease Control, and her colleagues stumbled across unexpected data that suggested a link between seasonal flu shots and an increased risk for pandemic flu.
The findings could not prove a causal link — perhaps people who get seasonal flu shots differ from those who don’t in ways that make them more susceptible to pandemic strains. But one possible interpretation is that seasonal flu shots inhibit immunity to those strains.
Dr. Skowronski’s team replicated the findings in five different studies and then shared the data with trusted colleagues. “There was tremendous pushback,” Dr. Skowronski recalls, and some questioned whether “the findings were appropriate for publication.”
“I believed I had no right to not publish those findings,” Dr. Skowronski says. “They were too important.” The findings were submitted to three journals and underwent at least eight lengthy reviews before the final study was published in PloS Medicine.
Last September, researchers with the Vaccine Safety Datalink, a collaborative project between the Centers for Disease Control and Prevention and various health care organizations, published a study in the journal Vaccine that found an association — not a causal link, the authors were careful to note — between a flu vaccine and miscarriage.
Soon after, Paul Offit, the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia and co-inventor of a lifesaving rotavirus vaccine, said in The Daily Beast that the paper shouldn’t have been published, in part because the study was small and conflicted with earlier research.
He also suggested that the authors had cherry-picked their data — a charge they vehemently deny. One physician questioned in the popular blog Science-Based Medicine why the research had been funded in the first place.
Dr. Offit says that researchers should handle findings differently when there’s a chance they might frighten the public. He thinks that small, inconclusive, worrying studies should not be published because they could do more harm than good.
“Knowing that you’re going to scare people, I think you have to have far more data,” he explains.
But even an inconclusive paper can be important, others say, as it can spur the larger, more definitive studies that are needed. It should be “put out there for the scientific community, to look at it, see it, know about it, refine study design and go and look again,” says Gregory Poland, a Mayo Clinic vaccinologist and the editor in chief of Vaccine. It is crucial, though, for researchers to carefully explain such results in their papers to prevent misinterpretation.
If a study scares parents away from vaccines, people could die. That’s a big risk to take to protect the sanctity of scientific discourse. I was warned several times that covering this issue could leave me with “blood on my hands,” too. But in the long run, isn’t stifling scientific inquiry even more dangerous?
“If we get to the point where we don’t want to look anymore because we don’t want to know the answer, then we’re in trouble,” says Dr. Edward Belongia, one of the authors of the Vaccine study and director of the Center for Clinical Epidemiology and Population Health at the Marshfield Clinic Research Institute.
This is not to say that anyone is covering up major safety problems, by the way; critical studies generally concern minor issues in specific contexts. But scientists could one day miss more important problems if they embrace a culture that suppresses research.
And, at the end of the day, by cherry-picking data, public health researchers are doing “exactly what the anti-vaccine people do,” Michael Osterholm, the director of the Center for Infectious Disease Research and Policy at the University of Minnesota, warns.
There’s no question that bad vaccine science does not deserve a forum — and much of the research cited by anti-vaccine activists is very bad indeed. But good science needs to be heard even if some people will twist its meaning.
One thing vaccine scientists and vaccine-wary parents have in common is a desire for the safest and most effective vaccines possible — but vaccines can’t be refined if researchers ignore inconvenient data. Moreover, vaccine scientists will earn a lot more public trust, and overcome a lot more unfounded fear, if they choose transparency over censorship.
Melinda Wenner Moyer is a science and health writer and a contributing editor at Scientific American.