229005 Ethics of communicating scientific findings of autism risks: Novel and enduring challenges in maternal and child health

Tuesday, November 9, 2010 : 3:15 PM - 3:30 PM

Michael Yudell, PhD, MPH , School of Public Health, Drexel University, Philadelphia, PA
Craig J. Newschaffer, PhD, MS , Department of Epidemiology and Biostatistics, Drexel University School of Public Health, Philadelphia, PA
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.

Learning Areas:
Ethics, professional and legal requirements
Public health or related public policy

Learning Objectives:
- Discuss specific risk communication and ethical challenges of communicating scientific findings of autism risk to parents, families, the public, and all other stakeholders with an interest or involvement with ASDs; - Assess the challenges of communication and cooperation between scientists, families, and other stakeholders in ASD research; - Describe novel strategies for communicating risk for ASDs; - Discuss the impact of risk communication challenges for ASDs on the field of maternal and child health

Keywords: Children With Special Needs, Maternal and Child Health

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Michael Yudell is an Assistant Professor in the Department of Community Health and Prevention at the Drexel University School of Public. Yudell received his Ph.D in sociomedical sciences from Columbia University, an MPH from the Mailman School of Public Health at Columbia University, an M.Phil. from the City University of New York in 20th Century U.S. History, and a BA from Tufts University. My current research takes my work with ethics, public health and genetics, (Welcome to the Genome: A User's Guide to the Genetic Past, Present, and Future, published in September 2004 by John Wiley and Sons) and stigmatized populations and applies it autism. Particularly relevant is how genetic information is communicated to the public. My work has been funded by NIEHS and Autism Speaks.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.