Project Description
Challenge
New biomarkers, new treatments, and new methods: scientific advancements bring new opportunities, but they also tend to bring further ethical questions with them. This is especially true in the field of neurodevelopmental disorders (NDDs) since it involves vulnerable populations such as children, people struggling with addictions and people with disabilities.
Project Summary
Built into NeuroDevNet (now KBHN) from day one, the Neuroethics Core examined ethical issues connected to the network’s research activities and how to navigate them. For example, investigators conducting neuroimaging studies were concerned about what to do if a child’s brain scan happened to reveal an “incidental finding”: an abnormality not related to the NDD being studied. Naturally, they would have to tell participants about anything that had definite ramifications for the child’s health. But when the clinical significance of the abnormality is less clear, the right approach is less obvious, since disclosure brings risks such as causing undue anxiety. Scholars affiliated with the Neuroethics Core tackled this question with particular regard to informed consent and the rights of children of different ages and capacities for making decisions.
Result
More generally, the Neuroethics team worked to increase the understanding—and enable the appropriate handling—of NDD-related ethical challenges facing clinicians, patients, families, policymakers, journalists, advertisers and researchers both inside and outside of the network. Instead of assuming they already knew what stakeholders were concerned about, they asked them what their key priorities were. Once they found out, just a few of the many areas they addressed included the risks of off-label antipsychotic prescriptions for kids with NDDs, the ramifications of screening for prenatal alcohol exposure, the underrepresentation of Indigenous children in ASD and CP research, the injustices experienced in healthcare by teens and young adults with CP and how doctors should respond to families requesting unproven therapies.
Team
Investigators
Project leads
Judy Illes, University of British Columbia
Eric Racine, Montreal Clinical Research Institute
Fellows
Nina Di Pietro, University of British Columbia
Emily Bell, Montreal Clinical Research Institute
