Ethics of Risk Communication in Autism Environmental Risk Research

Ethical policies concerning the communication of scientific findings are critical for the effective communication of risk and the building and maintaining of trust between stakeholders in scientific research, including the general public. Research into etiologic risk factors for autism spectrum disorders (ASDs) is growing at a rapid pace, already yielding numerous candidate genes and environmental exposures. Communication of emerging science around ASD risk can improve the lives of persons living with ASDs, their families, and the population at large by providing a sense of explanation or by aiding in decision-making. Risk communication can also show respect to research participants by sharing results in whose production participants were instrumental. To address these challenges, we undertook a mixed-methods study aimed at examining the ethics of risk communication as it concerns potential environmental risk factors for autism. Here we present findings from our survey and interviews with scientists conducting ASD environmental risk research. Our findings show, among a myriad of issues, that 90% of researchers surveyed strongly agree or agree that their research is relevant to families at high risk for ASD, yet only 61% strongly agree or agree that they have the training and support to communicate their results to this audience. Furthermore, findings suggest that there is a diversity of opinions concerning the nature of autism among scientists surveyed--whether it is a condition to be cured, treated, or prevented. Our findings shed light on ethical issues related to risk communication facing researchers, the challenges that impact ethical risk communication, and how autism risk researcher's risk communication practices compare to others in the field.