I am as interested in the negative effects of technology as I am in the positive, so I recently dove into a book by Seth Mnookin: The Panic Virus: A True Story of Medicine, Science, and Fear, which focuses on vaccines.
His summary of the Information Age challenge applies widely:
We can either take it upon ourselves to do a systematic analysis of all the available information – which becomes ever less feasible as the world grows more complex – or we can trust experts and the media to be responsible about the information and advice they provide.
As I read Mnookin’s history of vaccines – including opposition to them – I found myself making comparisons to other examples of populist uprisings in health.
Here’s a line that caught my eye:
Then, as now, [anti-vaccination forces] preached the superiority of beliefs over objective proofs, of knowledge acquired by personal experience rather than through scientific rigor.
Replace “anti-vaccination” with “pro-mammogram” and you’ve got the gist of some breast cancer survivors’ reactions to the 2009 U.S. Preventive Services Task Force recommendation that women in their 40s do not need routine mammograms.
Kristin Barker, a sociologist at Oregon State University, co-wrote a study about the public reaction to this recommendation, “Dead by 50: Lay expertise and breast cancer screening” (PDF). As she told HealthDay: “On the one hand, you had the science that was saying mammography for women in their 40s might not be as effective as we thought, and on the other hand, you had the personal experiences of the women who believed they were saved by having a mammogram.”
I highly recommend reading the full study. Barker and her co-author Tasha Galardi beautifully unpack the issues and don’t stint on describing the limitations of their work. For example, they studied only public breast cancer sites, completely open to search engines, with no registration requirements. Did outrage reach the same decibel level on closed breast cancer forums? What was the reaction among women who discussed the recommendations in non-breast cancer online forums?
This relates to other questions which kept coming up as I read The Panic Virus: Where would someone go to find a science-based discussion of vaccines? What’s the online opposite of Mothering magazine and “Dr. Bob” Sears, which Mnookin writes about in damning detail as purveyors of misinformation? If a respected journal like the Lancet couldn’t be trusted to properly vet the evidence, publishing the spurious Wakefield paper, then what source can be trusted? What role do search engines play in guiding people to certain sites? What role do citizens play? What role does the mainstream press play? What role do clinicians play?
Mnookin addresses some of these questions in his book and in even more pointedly in an op-ed published in The Washington Post, “An early cure for parents’ vaccine panic.” He argues that prenatal care should include vaccination education so parents can consider the evidence when they are not sleep-deprived or facing the needle with a newborn in their arms. That’s a strategy that resonates with Pew Internet’s research showing that health professionals continue to hold sway for the vast majority of U.S. adults with health questions.
But what about people who supplement their doctors’ advice by doing their own research? When Pew Internet measured interest in information about immunizations or vaccinations, 16% of internet users said they had looked for this type of information online. Not surprisingly, the group researching vaccination online skews young: 18% of internet users between the ages of 18-49 say yes to this question, compared with 12% of 50-64 year-old internet users and just 7% of internet users ages 65 and older. The group also skews toward being more educated: 19% of internet users with a college degree say they have looked online for information about vaccinations, compared with 13% of internet users with a high school diploma.
What are they finding in those searches? How do they judge the quality of information they find? More broadly, does the benefit of greater access to information outweigh the costs?
One reason I chose to read The Panic Virus was to immerse myself in a topic that is, in fact, wreaking a significant cost in the U.S. and in other countries. Vaccination rates have fallen, nearly-forgotten diseases are on the rise, lots of people are confused and frustrated – and the internet is certainly playing a role, speeding up the spread of information and helping like-minded people to find each other (on all sides).
We can’t go back to pre-internet days, nor would I wish for that outcome, but after reading The Panic Virus I have new respect for the dangers of misinformation, even if the original source was a prestigious, peer-reviewed medical journal.