Priorities for autism spectrum disorder risk communication and ethics

Abstract

Autism spectrum disorders are an issue of increasing public health significance. The incidence of autism spectrum disorders has been increasing in recent years, and they are associated with significant personal and financial impacts for affected persons and their families. In recent years, a large number of scientific studies have been undertaken, which investigate genetic and environmental risk factors for autism, with more studies underway. At present, much remains unknown regarding autism spectrum disorder risk factors, but the emerging picture of causation is in many cases complex, with multiple genes and gene-environment interactions being at play. The complexity and uncertainty surrounding autism spectrum disorder risk factors raise a number of questions regarding the ethical considerations that should be taken into account when undertaking autism spectrum disorder risk communication. At present, however, little has been written regarding autism spectrum disorder risk communication and ethics. This article summarizes the findings of a recent conference investigating ethical considerations and policy recommendations in autism spectrum disorder risk communication, which to the authors' knowledge is the first of its kind. Here, the authors discuss a number of issues, including uncertainty; comprehension; inadvertent harm; justice; and the appropriate roles of clinicians, scientists, and the media in autism spectrum disorder risk communication.

Keywords: autism; ethics; risk communication.

Figure 1

Participants in October 2009 meeting including speakers and invited stakeholders (Affiliations listed are as of the meeting date).

Figure 2

Talk topics.

Figure 3

Summary of recommendations in priority area 1.

Figure 4

Summary of recommendations in priority area 2.

Figure 5

Summary of recommendations in priority area 3.

Figure 6

Summary of recommendations in priority area 4.