Ethics of Communicating Scientific Findings on Autism Risk
Research on the causes of autism spectrum disorder (ASD) has become more complex, involving both genetic and environmental risks. In addition, the public debate over the causes of ASD is intense, making clear and sensitive communication of scientific findings critical. A further challenge lies in the ethical implications of research findings on ASD, which relates to how potential or real environmental and genetic risks for autism are communicated. Such ethical considerations have seldom received much attention in the communication of findings on autism risks. To address this shortcoming, we propose a two-day workshop of leading ASD experts in the fields of scientific research, clinical treatment, bioethics, genetic counseling, scientific news reporting, advocacy, education, and community health. The goals of this workshop would be to: (1) discuss the ethical issues relating to ASD research and communication of those results; (2) recommend specific policies relating to the ethics of communicating ASD research findings to the public; and (3) build new partnerships among diverse groups of ASD experts to improve sharing of ASD research findings. The workshop participants will be given hypothetical scenarios of new ASD research findings to discuss at the meeting, and the recommendations arising from the workshop will be published and shared on a website to further expand the discussions on these issues. This type of workshop is unique in gathering together such a diverse group of ASD professionals to promote cooperation in insuring communication of autism research findings to the public with sensitivity in a clear and ethical manner. The workshop will have approximately thirty invited participants and will be open to the general public. Craig Newschaffer (Professor and Chair of the Department of Epidemiology and Biostatistics) and Michael Yudell (Assistant Professor in the Department of Community Health and Prevention) at the Drexel University School of Public Health will be planning and organizing the proposed workshop.