With vaccine misinformation, libraries walk a fine line

Public libraries face difficult questions regarding what vaccine materials to make available. How to decide?

Published March 31, 2019 11:29AM (EDT)

Rose Main Reading Room at the New York Public Library (Getty/Drew Angerer)
Rose Main Reading Room at the New York Public Library (Getty/Drew Angerer)

This article originally appeared on Undark.

Amid a growing tug-of-war between adherents of evidence-based immunization practices and a roiling online subculture of suspicion, conspiracy, and misinformation related to vaccines, a beloved symbol of impartiality and free access to information — the public library — may now find itself at the center of the scrum.

Earlier this month, Hoopla — an online service that allows public library cardholders across the U.S. and Canada to download or stream movies and television shows for free — quietly pulled the documentary “Vaxxed” from its collection. The film, which peddles a repeatedly debunked theory linking vaccines to autism and claims to expose a vaccine-related coverup within the Centers for Disease Control and Prevention, can still be found on DVD at libraries around the U.S.

But Terry Donahue, Hoopla’s public relations and communications manager, indicated that several libraries had contacted the service asking that the film be removed. Donahue would not comment on specifics, nor would he confirm the date on which the title was excised from Hoopla’s offerings. But he did share the libraries’ rationale: “They didn’t want to be a source of misinformation,” Donahue said.

The decision on what to make available to library patrons — and what not to — would seem perilous territory for America’s foundational repositories of ideas, though debates over library collections are not new. Still, in an era beset by “fake news” and other artifacts of the disinformation age, libraries (and librarians) may once again find themselves facing difficult choices. One of the core values of librarianship, said Andrea Jamison, a lecturer in library science at Valparaiso University in Indiana, is upholding the principles of intellectual freedom — which include challenging censorship. “We do want to make sure we are presenting information that is accurate,” Jamison said. “But then the question becomes, who becomes the determining factor?”

The Hoopla decision comes amid a rash of measles outbreaks across North America, driven in large part, scientists say, by the refusal of some parents to have their children receive what are considered standard vaccinations. Online retailers and social media companies, too, have been facing growing pressure from health experts and politicians to curb the spread of vaccine misinformation. Last week, following a report by Wired, the online retail giant Amazon pulled listings for two books that embrace the false vaccine-autism connection, and peddle unscientific and even dangerous “cures” for the developmental disability.

Major online platforms, including Facebook, Pinterest, and YouTube have also announced plans to combat false or misleading vaccine information. And earlier this month, Amazon removed several anti-vaccination documentaries from its Prime Video streaming service — though some are still available for purchase on DVD.

Of course, these companies, along with Hoopla itself, which is owned by a media distribution company in Ohio, are at liberty to make decisions about the content they want to provide. Specialized university and institutional libraries typically curate based on the interests of their clientele, and they may not experience demand for such materials. But local public libraries, symbols of intellectual freedom and broad cultural enrichment in cities and towns nationwide, are at least nominally committed to serving everyone in a community, regardless of their views.

In online forums, vaccine skeptics have been vocal in their outrage at recent decisions by online retailers and social platforms, which they often view as being driven by a censorious government — and one that colludes with mainstream pharmaceutical interests. These forces, they warn, meddle in the intellectual marketplace at everyone’s peril. “If Amazon is going to be leaned on by the government to censor certain kinds of information,” said Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center, which advocates against mandatory vaccination, “then it could well extend at some point to cleansing the libraries of information that does not align with government policy or medical policy.”

But Allison Winnike, president and CEO of the Immunization Partnership, a nonprofit based in Texas that advocates for vaccination, said that handling misleading content is not necessarily about censorship, but rather “making sure that library patrons and consumers know that the information that they might be checking out contains anti-vaccine propaganda.”

While Winnike agreed that library collections should remain diverse, there are other considerations: “It’s also important they’re presenting useful and scientific information to folks as well,” she said.

* * *

Vaccination is not the first subject to raise concerns of public safety among libraries. In 1971, a publisher released “The Anarchist Cookbook,” a text written by a teenager named William R. Powell that includes instructions for making tear gas, explosives, and LSD, among other weapons and substances. In its initial investigation, the FBI called the book “extremely dangerous” and it has since been at the center of numerous legal challenges.

“It really is a book that could allow you to do a lot of damage,” said Rachel Stark, a health sciences librarian at Sacramento State in California. Concern was renewed when the text became available online. Following the September 11 terrorist attacks, Stark said, some libraries chose to pull their copies. Others retained them, arguing for the public’s right to access the information. (Powell had himself gathered much of the material for the book by combing through military documents and other materials at the New York Public Library.)

Today, the text remains easy to find. Offered through many university libraries, “The Anarchist Cookbook” is also available to download for free online and hard copies are sold on Amazon.

For its part, the American Library Association (ALA) positions itself as a staunch opponent of censorship, even in cases where material could be viewed as harmful. A statement on the organization’s website makes clear its belief that it is in the public interest for librarians to “make available the widest diversity of views and expressions, including those that are unorthodox, unpopular, or considered dangerous by the majority.”

While not comprehensive, an online catalog search suggests that vaccine- and autism-related books espousing a variety of unorthodox views are available at libraries across the country. “Healing the Symptoms Known as Autism,” for instance — which was removed by Amazon last week — is offered at more than 20 public libraries or library systems across the United States. The book instructs parents in how to treat autistic children with chlorine dioxide, a chemical commonly used as an industrial bleach. The other book that was pulled from Amazon, “Fight Autism and Win,” appears to be available at just a few libraries, while other dubious titles turn up at hundreds of locations.

In some of the nation’s current measles hotspots, catalog results suggest collections — and viewpoints — are mixed. As of Thursday, all copies of “Vaccines Did Not Cause Rachel’s Autism,” a spirited defense of vaccination by pediatrician-scientist Peter Hotez, and “Callous Disregard” by the discredited British doctor and chief architect of the rigorously debunked theory connecting autism to vaccines, Andrew Wakefield, were checked out of the Fort Vancouver Regional Libraries, which serve Clark County, Washington. Parents in Washington are permitted to claim “philosophical exemptions” from standard vaccinations for their children, and in areas like Clark County, vaccination rates are low. More than 70 cases of measles had been confirmed there as of March 21.

There’s some evidence to suggest that local libraries can play a pivotal role in spreading misinformation if personnel are not properly trained, or if materials are presented to patrons without qualification. A 2015 study by researchers at the University of North Carolina at Chapel Hill’s School of Information and Library Science, for example, randomly visited 78 local libraries in upstate New York, Delaware, and North Carolina. At each location, a researcher, posing as a patron, asked library staff for information on whether vaccines cause autism.

In nearly 70 percent of cases, the information provided — a wide assortment of mostly books, but also websites, magazines, and other materials — did not accurately answer the question with authoritative information. The book that was most often recommended was “Evidence of Harm,” by David Kirby, which a BMJ review said “echoes the conviction of parents who believe that vaccines are to blame for an ‘epidemic of autism.’” In three cases, the patron was pointed to a book by the actress Jenny McCarthy, who blames vaccines for her own child’s autism.

“She knows a lot about this subject,” one library staff member told the researcher. “She’s pretty much the expert.”

A more recent study, released last month, sought to test the utility of public trust in libraries as a way of combatting misinformation. The results were mixed.

* * *

The decision by Hoopla to remove “Vaxxed” from its offerings at the behest of libraries notwithstanding, the ALA has mostly watched moves by Amazon and other online companies from the sidelines, and it has not taken any official action or position on the availability of vaccine-related materials. “From our perspective,” said Deborah Caldwell-Stone, interim director for the ALA’s Office for Intellectual Freedom, “it’s a pure collection-development issue that libraries address individually according to their policies.”

While the ALA publishes guidelines — including a “Library Bill of Rights” — they do not constitute mandatory rules. Rather, the fate of these books and media, and the context in which they’re presented, is left up to libraries to decide based on their specific missions. “If a book is represented as nonfiction, there may be requirements in the policy that it meets certain standards for accuracy or tested knowledge,” Caldwell-Stone said. “And it’s the job of the library to evaluate whether the book falls under that. Or they may classify it as a book that’s addressing a controversy and catalog it accordingly.”

In a public Facebook group devoted to library issues, Sara White, a youth services librarian in Olympia, Washington, posed the question in 2017: “Should libraries collect materials that have ‘alternative facts,’ simply because there is patron demand?”

She pointed to “Vaxxed” by way of example.

The response from many group members was mixed. Some shared that their libraries did not carry “Vaxxed” or similar titles. Others said they did, though they suggested that such material ought not be included among other nonfiction offerings. But others argued that such parsing was not the role of the librarian: “Why do you feel you are protecting the public by [censoring],” asked Sue Shear Moyer, director of the Scio Memorial Library in Scio, New York. “And how do you determine what is worthy by your own personal opinion?”

She later added: “I never considered it the job of the library to protect the public.”

Such divergent opinions on the matter are not unusual. In a phone call, Andrea Heisel, collections services manager at the Timberland Regional Library system in western Washington, which includes the Olympia library where White works, noted that her library system’s collections policy does not specifically address the issue of accuracy. “We have lots of books on Bigfoot and Sasquatch,” Heisel said. But even when considering more serious content that could be harmful, she notes that librarians are trained not to assume the intent of their patrons. “We try to present information without judgment.”

Heisel added that so far, no patrons have complained about the library’s holdings, which include the “Vaxxed” video. “I’m kind of surprised honestly,” she said, speculating that this may be due to the large community of people who are opposed to vaccinations in the state.

Another librarian in central Kentucky, who asked not to be identified because she was not authorized to speak for the institution, said that her library had previously removed the “Vaxxed” DVD from its shelves simply because there was “no interest and because it was already in the collection” through Hoopla. But given that the streaming service has now pulled it, and in light of information that emerged on that film, she added, the library would not re-stock the title. “We would not buy it again,” she said.

Though she wasn’t previously familiar with the title, when asked, Kathy Penny, manager of collection services for the Cambridge Public Library in Massachusetts said the move by the Kentucky library “sounds like a very sound decision.”

Of course, libraries routinely make judgment calls when selecting what materials to carry. And if a library’s collection development policy provides justification for a removal, libraries are, for the most part, well within their rights to pull it. “There’s this underlying recognition,” said Bob Drechsel, an expert in media law at the University of Wisconsin-Madison, “that it’s extraordinarily important and unavoidable that librarians have a great deal of discretion to make decisions about what they think is in the best interest of their collections and their patrons.”

If a library’s policy does allow them to pull material “because it is demonstrably, factually false — and potentially dangerously false information,” Drechsel said, a librarian would have “an awfully strong argument to make” against any potential challenges.

Personal decisions by parents to avoid vaccinating their children, of course, can have a devastating impact on individuals and their communities — a fact known well by the American Academy of Pediatrics (AAP). When “Vaxxed” was first released in 2016, the AAP applauded a decision by the organizers of the Tribeca Film Festival in New York — made under pressure — to cancel its planned screening of the film. Asked whether the organization would similarly applaud a decision by public libraries to remove “Vaxxed” and likeminded books and media from their shelves, Wendy Sue Swanson, a pediatrician and spokesperson for the AAP, suggested that the question was “delicate.”

“If it’s Hoopla or if it’s a film festival or if it’s a social network, or anything else, I think people are starting to recognize and realize that by being a distributor of any kind — even a library system, right, being a distributor — might hold a greater level of importance when it comes to something specifically like vaccines because of the community health outcome,” Swanson said.

“I care deeply about people’s personal liberties,” she added, “but I care most that we actually get our personal liberty when we’re alive to have it.”

Still, Caldwell-Stone reiterated that context is always important to keep in mind. “These books have been in the news — or the authors have been in the news,” Caldwell-Stone said, “and people may be curious to read the books without any intent of taking action on what’s in the books, but they want to understand what the controversy is.”

In addition to contextualizing information on the shelves, librarians also advocate for continued education, both for their peers and the public. “Libraries tend to be very siloed,” Stark said. She noted that librarians may benefit from consulting with their colleagues who specialize in health information or from bringing in experts from their local communities to talk to the public about the importance and safety of vaccination.

As libraries have to budget their limited time and resources, however, Stark recognized that they may instead choose to pull a book “to protect — or what they would see as protect — the public from what could be deadly information.”

* * *

If a library does ultimately decide to remove a book or other content and that decision is challenged by a patron on the basis of censorship, the ALA may review the case to determine whether it was done according to that library’s policies. And while some anti-vaccination groups have a monetary incentive to keep their messaging going — selling books and online courses, as well as raising money for future social media campaigns — public libraries make such content available for free in the name of serving the public.

Still, Allison Winnike of the Immunization Partnership says libraries should adequately research new materials before making them available to patrons and evaluate those already on the shelves. Part of the reason some books end up in libraries at all, she suggested, is because of deliberate tactics taken by some well-funded anti-vaccine groups to purchase “large quantities of their books in an effort to boost their sales numbers so they’ll rise in the rankings.”

Local libraries appear to sometimes host public viewings of the “Vaxxed” documentary and in December, a Facebook page devoted to the movie began encouraging its 94,000 fans to lobby their local libraries to offer it.

Winnike says she would not call for the removal of such materials — just that they be properly identified. “If a student’s doing a research paper, it’s important that they can see varied information,” she said, “but they just need to know when it’s considered a reputable source” compared to one that may contain misinformation.

Winnike also floated the idea of labeling such materials, similar to parental warnings on TV shows, but the ALA is staunchly opposed to this. According to an interpretation of its “Library Bill of Rights,” published on the ALA website, the adoption of a rating system to advise patrons about the suitability of certain content “may be unconstitutional.”

Whatever the answer to that, public health officials like Swanson of the American Academy of Pediatrics worry that absent real context, pulling unscientific and even dangerous vaccination misinformation from library access may be worth it if it helps to fight the spread of preventable diseases. On libraries that might choose to do so, Swanson was unequivocal: “As a pediatrician, as a mom, and as somebody who understands infectious disease and the benefit — the profound benefit of vaccination science,” she said, “I support their choice at not distributing something that could cause harm.”

Still, as a lecturer on library science, such moves make Jamison uneasy. Labeling and pruning of collections can quickly lead to murky territory, she suggested, and curators need to stay as neutral as possible in order to preserve the role that libraries play in communities nationwide.

“We represent the core values,” Jamison said, “of what democracy is.”

Jane Roberts is the deputy editor of Undark.

By Jane Roberts

Jane Roberts is the deputy editor of Undark.

MORE FROM Jane Roberts

Related Topics ------------------------------------------

All Salon Anti-vaxxers Immunization Public Libraries Science & Health Undark Vaccines