Once upon a Lyme: How scientists respond to public distrust and misinformation

• In Event: Science, Knowledge & Technology Section Roundtables
  In Refereed Roundtable (60 minute): Table 12: Trust, Mistrust, and Distrust

Abstract

How do biomedical researchers respond to public controversies? At a time when the safety and efficacy of federally approved drugs are increasingly scrutinized by consumers, how do researchers adapt and pivot when controversies arise? We take the case of Lyme disease prevention researchers. In 2002, after being on the market for only four years, the first and only Lyme disease vaccine for humans, LYMErix, was withdrawn because of public concerns about its potential to cause harm. Although the vaccine was proven to be safe, public distrust had made it unprofitable. Since then, reported Lyme disease cases have more than tripled, becoming the most common vector borne illness in the U.S. (largely because climate change has allowed ticks to spread). Yet, there are no new approved human vaccines for its prevention. Drawing on interviews with scientists and doctors who research Lyme disease, we find that over twenty years later, the discontinuation of LYMErix has continued to impact the trajectory of Lyme disease prevention research and researchers’ perceptions of feasibility. Early controversies have compelled current researchers to avoid human vaccines and creatively chart new paths to solve a solved problem, developing interventions and strategies that would be more palatable to a distrusting public. Alternative lines of research have largely focused on vaccines for wildlife, ecological interventions, and non-vaccine technologies for humans. We argue that not only is science vulnerable to the impacts of public misinformation, but what researchers seek to know is steered by what the public refuses to believe.

Authors

• Robert Max Freedman, Vassar College

• Catherine Do Tan, Vassar College