Ethics of Communicating Scientific Findings on Autism Risk

DESCRIPTION (provided by applicant) Research on the etiology of autism spectrum disorder (ASD) is increasingly focused on complex genetic and environmental mechanisms. Findings from major new initiatives now underway, including work being done by the EARLI Network, a multi-site epidemiologic study designed specifically to investigate environmental and genetic risk factors for ASD, have the potential to enrich our understanding of the etiology of ASD. Given the intensity of public debate about causes for ASD, the communication of scientific findings relating to its etiology presents significant difficulties and demands sensitivity. Further difficulties will arise because of the challenges involved in communicating complex environmental and genetic risks likely to emerge as being potentially associated with ASD. This complexity demands an understanding of the ethical implications associated with scientific findings on autism. However, little attention has been given to these issues. To address this shortcoming, the investigators propose a two-day meeting of leading ASD stakeholders (including scientists, clinicians, bioethicists, genetic counselors, science journalists, parent and patient advocacy groups, educators, interventionists, and community health workers). The purpose of the meeting would be threefold: 1) to examine the ethical issues involved in ASD research and its dissemination;2) to bridge the gaps between bioethics and research and communication practices by recommending specific guidelines or policy proposals;and, 3) to build new partnerships by including a diverse set of community groups and stakeholders in this activity in order to facilitate the responsible dissemination of emerging knowledge to clinicians, genetic counselors, journalists, parents, and patients, among others. In preparation for the workshop, several "new discovery" scenarios will be developed by experts in the field and circulated to participants to promote initial discussions during the course of the workshop. A "white paper" of key workshop findings will be produced for publication and a website will be established as a means of both disseminating these findings and establishing as a platform for potential future expansion into an ongoing interactive forum on these issues. The investigators also propose editing workshop proceedings into a volume that they hope to have published by an academic press. This workshop would be a landmark in promoting cooperation among stakeholders in autism research, and assist in developing strategies to insure the communication of research findings to the general public.