When considering how to balance freedom of speech with attempts to manage the effects of misinformation, it’s reasonable to consider the fact that some types of misinformation cause direct demonstrable harm. Vaccine-preventable diseases, such as measles, are on the rise recently due partly to active campaigns of clear misinformation about vaccines (poverty and lack of access still remain a huge challenge as well).
A recent study out of Denmark quantifies the potential harm, this time regarding the HPV vaccine. The HPV vaccine provided protection from multiple strains of the Human Papilloma Virus, which is responsible for many cases of cervical cancer. As I noted when I discussed HPV vaccine previously, Dr. Heidi Larson points out that:
Every year brings 528,000 new cases of cervical cancer and 266,000 deaths, linked to human papillomavirus (HPV). We have a highly effective HPV vaccine, but suspicion stands in the way of its adoption in many countries.
The vaccine is safe and effective (actually there are several vaccines with different coverage of various strains – the latest is nonavalent, covering nine strains). It prevents cancer and saves lives. If we consider risk vs benefit, there is clear benefit to the vaccine with minimal risk. But of course these facts don’t get in the way of antivaccine propaganda.
The primary obstacle to uptake of the HPV vaccine around the world has been unsubstantiated fearmongering. For example, there are commonly rumors about deaths associated with the vaccine. As David Gorski has discussed, however, none of these rumors are credible and the evidence does not support them. But people are easier to scare with stories than they are to reassure with dry facts. The recent Denmark study shows the effects:
In the period with some negative media coverage, HPV vaccine uptake fell to 83.6% (95% CI:78.0%–89.7%) of baseline uptake. In the period with extensive negative media coverage, uptake fell even further to 49.6% (95% CI:44.5%–55.2%) of baseline uptake. After the information campaign, HPV vaccine uptake recovered to its baseline level (109.2%, 95% CI:90.1%–132.4%) due in part to catch-up doses. Despite the recovery, an estimated 26,000 fewer girls initiated the vaccine than if uptake had not declined.
The campaign to counter the misinformation cost Danish taxpayer about $1 million. That represents resources not used on other public health initiatives. There is also significant morbidity and mortality associated with the misinformation. Public health measures have statistical effects, and that includes misinformation campaigns.
The experience in Japan was even more stark. Uptake of the HPV vaccine fell from 70% to single digits (reports range from 1-7%) after a vaccine panic hit the media. This went beyond misinformation to an actual panic. The episode was triggered by a preliminary study involving mice and reporting to show brain damage from the vaccine. The episode was a perfect storm of incompetence and malfeasance. The research itself was preliminary, not replicated, and frankly dubious. Despite this the media ran with it, spreading unnecessary fear. Further, the government’s response was worse than inadequate. They actually made the situation worse by suspending their recommendation for the vaccine.
One researcher stood up to the misinformation, Riko Muranaka. She looked into the study and found:
When Muranka [sic] finally tracked down the source of the slide, the researcher involved told her the experiment had involved only one mouse being injected with each vaccine, and that the mouse brain showed by Ikeda was not even the one injected with HPV vaccine.
Muranaka also discovered that the mice vaccinated in the experiment had been genetically modified and produced an auto-antibody naturally during aging. Serum full of the antibody was taken from these mice, sprayed on brain sections of normal mice and photographed to show “brain damage” supposedly caused by HPV vaccine.
But the PR damage was done. Further, when Muranaka published her findings, Ikeda sued her for defamation. This had the effect of causing a media blackout for Muranaka, including canceling her book that was about to be published. The Ikeda study was also followed quickly by a class action lawsuit against the HPV vaccine manufacturers, and has put a pause on further government support for the vaccine. This could take a decade or more to resolve. (There are many scary parallels between this story and the effects of Andrew Wakefield’s fraudulent study on the MMR vaccine in the UK.)
The end result of all this is likely to be 100,000 women or more suffering from HPV-related cervical cancer.
The more difficult question is – what can be done about it? There is no easy solution. However, at the very least the media needs to be more responsible. They should take their lead on science stories, especially medical stories, from objective and recognized experts. Governments should also be more proactive in fighting misinformation, stemming panics, and disseminating reliable information. Whistle-blowers like Muranaka also need to be protected better with libel reform.
There is also a great deal of debate about the role of giant social media companies. Many argue that they have some responsibility for the information that spreads on their platforms. They are certainly under no obligation to promote harmful misinformation, even if inadvertently through blind algorithms. But perhaps they should also take an active role in minimizing the spread of clearly harmful medical misinformation.
One way to look at it is this – a small minority now has the ability to hijack public health policy by waging their own shadow campaign on social media. They are accountable to no one. They can force the expenditure of limited public health dollars just to minimize the effect of their own campaigns. This is also an asymmetric campaign, because it is much easier to spread fear than proper information. At the very least it is reasonable to filter out their harmful misinformation from private platforms. Panels of experts can be used to provide the filter, and fair processes can be made available for appeals. At the very least these options need to be explored.