Ethics of communicating scientific findings of autism risks: Novel and enduring challenges in maternal and child health

The increase in prevalence for Autism Spectrum Disorders (ASDs) poses significant challenges to maternal and child health, and to public health generally. From blaming mothers to genes to vaccines and vaccine ingredients, the search for what causes ASDs has produced more condemnation and controversy than a definitive understanding of ASD. As we enter an era in which the release of findings from autism etiology research is imminent, scientists and the public can work together to help improve the communication of scientific findings. To address these challenges, the Drexel University School of Public Health hosted a meeting in October 2009 entitled “The Ethics of Communicating Scientific Findings of Autism Risk,” which brought together leading ASD stakeholders (including scientists, clinicians, bioethicists, genetic counselors, science journalists, parent and patient advocacy groups, educators, and community health workers) and leaders in the relevant areas of risk communication, bioethics, maternal and child health, and community welfare. This talk will review critical points that emerged at this groundbreaking meeting, including discussions of findings from a survey done examining parental knowledge, attitudes, and beliefs towards autism research, the ethical issues surrounding ASD risk communication, the role that funding and advocacy organizations can play in promoting clearer dissemination of information about autism risk factors, and the ethical and risk communication guidelines developed by the speakers and stakeholders involved in this meeting that are most directly relevant to autism scientists, parents, and the public. Finally, the talk will conclude by sharing recommendations for translating these guidelines into policy and practice.