Autism Speaks Sponsored Workshop Provides Guidelines for Risk Factor Dissemination
Ethics of Communicating Scientific Findings of Autism Risk
October 6-7, 2009
Drexel University
School of Public Health
Philadelphia, Penn.
October 6-7, 2009
Drexel University
School of Public Health
Philadelphia, Penn.
Research regarding the many potential causes of autism spectrum disorder (ASD) has become much more complex, involving both genetic and environmental risk factors. In addition, the public debate over the causes of ASD is intense, making clear and sensitive communication of scientific findings more critical than ever. A further challenge lies in the ethical implications of research findings regarding risk factors. Yet, such concerns have seldom received much attention when considering how information about risk for ASD should be communicated. This first autism workshop of its type gathered together a unique and diverse group of ASD professionals to promote cooperation in ensuring communication of autism research findings to the public.
In order to address the gaps in knowledge and provide an open forum for communication, on October 6-7, 2009, Autism Speaks, together with the NIH, hosted a two day workshop that included approximately 60 scientists, clinicians, media representatives and parents of individuals with autism to discuss and brainstorm ethical communication of risk factors in autism. Since much remains to be discovered about genetic and environmental risk factors, and perhaps most importantly, their interaction, the meeting provided an opportunity for the community - public and private – to gather and listen to experts and voice their thoughts on the issue. The conference was organized by Craig Newschaffer, Ph.D. and Michael Yudell, Ph.D. at Drexel University in Philadelphia, Penn., and was funded by a grant from Autism Speaks' Environmental Sciences initiative.
The first day of the meeting was devoted to presentations from leaders in environmental health, ethics, genetics, genetic counseling, epidemiology, and experts in risk communication. They set the stage for the second day, when Autism Speaks' Chief Science Office Geri Dawson, Ph.D. spoke on the role of advocacy organizations in conveying information to families, and breakout sessions were held for audience members to participate in more informal but focused discussions. These smaller group discussions allowed for recommendations on best practices to move forward in this challenging field.
The conference, which was videorecorded and can be seen in its entirety here, was advertised through the Autism Speaks website as well as through distribution of information across the local Philadelphia community. A summary of the workshop will be drafted in late December with a final version available in early 2010. After the meeting conclusion, Dr. Dawson commented, "As our knowledge of the genetic and environmental risks associated with autism become more refined, we need to be able to communicate those findings in a responsible and sensitive way to families affected by autism and the general public. This meeting reflects the ongoing commitment of Autism Speaks to help researchers and clinicians create effective tools that will allow others to understand the differences between early stage results and those with clinical significance."
Download/view meeting flyer here.
In order to address the gaps in knowledge and provide an open forum for communication, on October 6-7, 2009, Autism Speaks, together with the NIH, hosted a two day workshop that included approximately 60 scientists, clinicians, media representatives and parents of individuals with autism to discuss and brainstorm ethical communication of risk factors in autism. Since much remains to be discovered about genetic and environmental risk factors, and perhaps most importantly, their interaction, the meeting provided an opportunity for the community - public and private – to gather and listen to experts and voice their thoughts on the issue. The conference was organized by Craig Newschaffer, Ph.D. and Michael Yudell, Ph.D. at Drexel University in Philadelphia, Penn., and was funded by a grant from Autism Speaks' Environmental Sciences initiative.
The first day of the meeting was devoted to presentations from leaders in environmental health, ethics, genetics, genetic counseling, epidemiology, and experts in risk communication. They set the stage for the second day, when Autism Speaks' Chief Science Office Geri Dawson, Ph.D. spoke on the role of advocacy organizations in conveying information to families, and breakout sessions were held for audience members to participate in more informal but focused discussions. These smaller group discussions allowed for recommendations on best practices to move forward in this challenging field.
The conference, which was videorecorded and can be seen in its entirety here, was advertised through the Autism Speaks website as well as through distribution of information across the local Philadelphia community. A summary of the workshop will be drafted in late December with a final version available in early 2010. After the meeting conclusion, Dr. Dawson commented, "As our knowledge of the genetic and environmental risks associated with autism become more refined, we need to be able to communicate those findings in a responsible and sensitive way to families affected by autism and the general public. This meeting reflects the ongoing commitment of Autism Speaks to help researchers and clinicians create effective tools that will allow others to understand the differences between early stage results and those with clinical significance."
Download/view meeting flyer here.
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