The Drexel University School of Public Health was recently awarded a $25,000 grant from Autism Speaks to lead a national conference on autism spectrum disorders (ASD) research in the Fall of 2009. The conference will examine ethical and risk communications issues of ASD research, as well as help address health disparities in the communication of autism research findings.
Hosted by the School of Public Health, the two-day workshop is slated to include approximately 30 ASD stakeholders from diverse research backgrounds and advocacy groups, as well as leaders in risk communication, bioethics, science journalism and children’s environmental health. The participants will examine the ethical issues involved in ASD research and dissemination of its findings, create recommendations to bridge the gap between bioethics and policy in terms of communicating ASD research findings to the public, and build partnerships towards the elimination of health disparities in ASD communications.
"The complexity of communicating potential or realized environmental and genetic risks of ASD demands an understanding of the ethical implications associated with scientific findings on autism," said Dr. Michael Yudell, a professor at the Drexel University School of Public Health and one of the conference organizers. "However, little attention has been given to the ethics of autism risk factor research and the ethical challenges involved in communicating complex autism risk factor findings to the public."
The conference will include formal presentations, panel discussions and breakout sessions.
"This will be a landmark conference in its anticipation of ethical and risk communication issues very likely to emerge on the heels of the current wave of large-scale autism risk factor research projects," said Dr. Craig J. Newschaffer, the chair of the Department of Epidemiology and Biostatistics at the School of Public Health, who will co-organize the conference with Dr. Yudell. "In addition to the ethics of ASD communication, a particular concern will be a focus on the already recognized health disparities in autism diagnosis and treatment, and development of strategies to ensure that future discoveries are communicated in a culturally competent manner.
A "white paper" of conference findings will be produced for publication and the organizers hope that a Web site will be created to post the findings and serve as a platform for future interactive forums on these issues. The conference’s proceedings will be edited into a volume for possible publishing by an academic press.
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