Written by Jessica Rech an undergraduate student at IUPUI and coauthored by Brandi Gilbert, director of LHSI. I am an undergraduate student…
Back in the 1980s, when I was an MD/PhD student in New York, I learned a lot about biochemistry and molecular pathogenesis of infectious diseases. I also gained some understanding about the culture of science (mostly through diffusion). At that time, the culture said that directly engaging public audiences was a risky endeavor, and attempting to directly interact with journalists, even serious science journalists, was often frowned upon and potentially something that violated the professional norms of the scientist. Years later, in speaking with colleagues, I realized that I was not alone in my cultural immersion.
Fast-forwarding more than 30 years, I find that the cone of silence culture in which scientists only speak and write for one another is still widely prevalent in many academic health centers. I’ve argued that such attitudes are, in fact, detrimental and have created a vacuum, allowing anti-science movements to take hold and even flourish. As evidence, I often cite US-based surveys finding that most Americans cannot name a living scientist, while another finding that only a minority of scientists blog or talk about their work on social media. In fact, I’ve just written an editorial for PLOS Biology about my concerns, entitled Crafting your Scientist Brand1, which argues that we need more scientists with national recognition who can serve as modern day faces of science in America. We especially need more women scientists taking on this new role.
The current rise of the modern day antivaccine movement is an example of what happens when scientists go silent. It began just before the start of this new century with a paper published in The Lancet and, ultimately, led to widespread fears that vaccines cause autism. Although the paper was retracted 12 years later, by then the antivaccine movement had gained momentum and strength. As we are about to enter our third decade of the movement, now affords a good opportunity to step back and assess the damage, especially in Europe where it began, and now in the United States where it also took hold.
It turns out that measles is a pretty good biomarker of antivaccine activities. Because of its high transmissibility, once vaccine coverage goes below a 90 or 95 percent threshold, breakthrough measles outbreaks become possible. When this occurs, the consequences are often dire. Measles is a killer disease that, during the 1980s, probably killed more children than any other pediatric infection. Beginning in the early 2000s, as vaccine coverage began to decline, we started seeing measles outbreaks in the United Kingdom and then across Europe. During the first half of 2018, the World Health Organization reported that there were more than 40,000 cases of measles in Europe, with an abrupt rise in antivaccine activities in Italy. In the US, there was a terrible measles outbreak in Minnesota last year, and multiple cases this year. In several western states, we’ve seen counties where vaccines are being withheld from children. The antivaccine movement is now global, operating in multiple countries. The movement is well-organized and, in many cases, well-funded.
Today, I’m a vaccinologist, a scientist leading a research group that develops neglected tropical disease vaccines. But I’m also the father of Rachel, an adult daughter in her 20s with autism and a group of intellectual disabilities. Over the last two decades, I have watched the antivaccine movement grow in terms of outreach and dominance on the internet and social media. I’ve watched them become politically organized and influence national governments and state legislatures to make it easier for parents to exempt their children from their vaccinations. I’ve read books and watched “documentaries,” that deliberately create a phony portrayal of vaccines as toxic agents.
My newest book, Vaccines Did Not Cause Rachel’s Autism (Johns Hopkins University Press) represents efforts to counter the current false narrative about vaccines. It was written in response to what I felt was a vacuum in terms of pro-vaccine advocacy. The book does not attempt to reproduce other excellent books by Paul Offit, Seth Mnookin, Michael Kinch, and others, who expertly tell the story of the antivaccine movement. Instead, I highlight newer findings related to the genetics and epigenetics of autism and the promise of whole exome sequencing. I also report on the neurodevelopmental pathways leading to autism and how it is well underway even before kids get vaccinated. Simultaneously, I also cite the evidence showing there is no link between vaccines and autism.
Another unique aspect of the book is that it tells a self-reflective and personal history about my wife Ann and me, and the challenges of raising our daughter. I share my worries about Rachel’s long-term future and what could happen to Rachel after Ann and I are gone. The book also describes how Rachel shaped my career as a scientist, and a bit of what life is like as a working scientist, as the chapters alternate between the science and the story of Rachel. In this sense, I think the book gives a face to what it means to be a scientist in America and also an autism parent.
I’m really excited about Vaccines, and hope it might help promote a new genre of literature in which working scientists tell their personal story, while explaining science to general audiences. It’s a very honest book and one that I hope gives encouragement to young scientists, while at the same time helps to slow or reverse the antivaccine movement.
- Hotez PJ (2018) Crafting your scientist brand. PLOS Biology, in press.
- Hotez PJ (2018) Vaccines Did Not Cause Rachel’s Autism. Johns Hopkins University Press.
Edited by Bill Sullivan, PhD, Indiana University School of Medicine.