A broken trust: lessons from the vaccine--autism wars.

PLoS Biology, Public Library of Science, San Francisco, California, United States of America.
PLoS Biology (Impact Factor: 11.77). 06/2009; 7(5):e1000114. DOI: 10.1371/journal.pbio.1000114
Source: PubMed

ABSTRACT Researchers long ago rejected the theory that vaccines cause autism, yet many parents don't believe them. Can scientists bridge the gap between evidence and doubt?

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    ABSTRACT: Data are limited on whether providers understand parental attitudes to recommended childhood immunizations. We determined parental attitudes and assessed how accurately providers estimated parental opinions. Survey of parents and providers (pediatricians, nurses, medical assistants) in randomly selected practices in Houston, Texas. Surveys assessed demographics, perceptions of immunization importance, safety and efficacy, and acceptability of vaccine delivery. Providers estimated parental responses. 401 parents (82% mothers, 12% fathers, 6% other) and 105 providers participated. Parents thought vaccines were important for health (median score 9.5; 0=not important, 10=extremely important) but also were concerned regarding vaccine safety and side effects (8.9 on 0-10 scale). 309 (77%) agreed that vaccines effectively prevent disease. Route of administration mattered to 147 (37%), who preferred injection (9.0) over oral (7.3) or intranasal (4.8) routes. Although parents would prefer three or fewer injections per visit, preventing more diseases (189 [47.6%]) was more important than number of injections (167 [42.3%]) when deciding the number of vaccines allowed per visit. White parents rated vaccines less important in preventing some illnesses than did non-white (P≤0.006 for meningitis, hepatitis, HPV, influenza and rotavirus) and rated number of injections per visit more important than number of diseases prevented (51.6% white versus 34.2% non-white; P 0.002). Providers underestimated parental attitudes toward vaccine importance (particularly influenza and HPV), and overestimated the proportion of parents who thought route of administration mattered (63%) and that number of injections per visit was the most important factor (76%) around parental vaccine decisions (P<0.001 for parent-provider mismatch). Most surveyed parents believe vaccines are important for child health and rate disease prevention higher than number of injections entailed. Providers underestimate the importance of some vaccines to parents and overestimate parental concerns regarding route of administration. Future research should focus on how this mismatch impacts parental vaccine decisions.
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    ABSTRACT: This article demonstrates how misinformation concerning autism and vaccinations was created and suggests that social workers may be perfectly poised to challenge pseudoscience interpretations. Utilizing social network theory, this article illustrates how erroneous research, mass media, and public opinion led to a decreased use of vaccinations in the United States and a seven-fold increase in measles outbreaks. It traces the dissemination of spurious research results and demonstrates how information was transmitted via a system of social network nodes and community ties. This article encourages social workers, as frontline knowledge brokers, to counter misinformation, which may lead to significant public health consequences.
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    ABSTRACT: There has been a substantial increase in research activity on autism during the past decade. Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap. This study therefore investigated the views of community involvement in autism research both from the perspectives of autism researchers and of community members, including autistic adults, family members and practitioners. Results from a large-scale questionnaire study (n = 1,516) showed that researchers perceive themselves to be engaged with the autism community but that community members, most notably autistic people and their families, did not share this view. Focus groups/interviews with 72 participants further identified the potential benefits and remaining challenges to involvement in research, especially regarding the distinct perspectives of different stakeholders. Researchers were skeptical about the possibilities of dramatically increasing community engagement, while community members themselves spoke about the challenges to fully understanding and influencing the research process. We suggest that the lack of a shared approach to community engagement in UK autism research represents a key roadblock to translational endeavors.
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