Autism, risk communication and ethics

Autism spectrum disorders are undeniably a public health issue of some importance. Their incidence has increased markedly in recent years, for reasons that are not entirely clear to the scientific community; these disorders can have a devastating effect on both affected individuals and their families; and little in the way of etiologic understanding or treatment exists. A large amount of etiologic research is currently underway, and a spate of new research findings is expected to be available in the next few years. The difficulty of interpreting some of these new data—particularly genetic risk factor data—and the vacuum of etiologic knowledge into which they will fall combine to present scientific and ethical challenges in autism risk communication. This presentation will focus on a number of ethical issues in autism risk communication, which include (1) the avoidance of blame and stigma, both of which loom particularly large in the history of autism; (2) the maximization of benefits and minimization of harms to risk message recipients; (3) discrepancies between populations in the efficacy of risk communication, and the justice considerations this invokes; (4) ethical issues pertaining to the interpretation of risk data, both as relates to population versus individual risk, and also as relates to the interpretation of findings from relatively new research methodologies; (5) the appropriate level of evidentiary support for risk claims before they are disseminated; (6) the value-ladenness of risk, and its implications for how risk communication should be conducted, particularly as relates to public involvement in science.