Drexel University, USA.
Autism. 2013 Nov;17(6):701-22. doi: 10.1177/1362361312453511. Epub 2012 Aug 23.
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.
自闭症谱系障碍是一个日益受到公众关注的健康问题。近年来，自闭症谱系障碍的发病率一直在上升，并且给患者及其家庭带来了重大的个人和经济影响。近年来，已经进行了大量的科学研究，以探讨自闭症的遗传和环境风险因素，并且还有更多的研究正在进行中。目前，对于自闭症谱系障碍的风险因素还有很多未知之处，但引起自闭症的原因正在逐渐明晰，涉及多个基因和基因-环境相互作用。自闭症谱系障碍风险因素的复杂性和不确定性引发了许多问题，即当进行自闭症谱系障碍风险沟通时，应该考虑哪些伦理因素。然而，目前关于自闭症谱系障碍风险沟通和伦理的研究甚少。本文总结了最近一次会议的研究结果，该会议探讨了自闭症谱系障碍风险沟通中的伦理考虑和政策建议，据作者所知，这在该领域尚属首次。在这里，作者讨论了一些问题，包括不确定性、理解、无意伤害、公正以及临床医生、科学家和媒体在自闭症谱系障碍风险沟通中的适当角色。
