ELSI Issues Associated with Childhood-Onset Psychiatric Disorders

Research Overview:

The dramatic increase in both prevalence and diagnosis of childhood-onset psychiatric disorders has stimulated public interest in identification of genetic contributions to these disorders. Genetic research on autism spectrum disorders (ASDs) and attention deficit hyperactivity disorder (ADHD) has been particularly promising, determining high heritability estimates and isolating multiple genetic contributions for both disorders. However, the clinical and genomic complexity associated with these types of disorders has made definitive biological explanations impossible to obtain, which produces frustration and miscommunication between researchers studying these disorders and groups that hope to benefit from the research performed.

Using ASDs and ADHD as models we are assessing researcher perspectives on social responsibility towards dissemination and interpretation of genetic research in childhood-onset psychiatric disorders, as well as the extent to which different stakeholders (e.g., advocacy groups) influence the direction and progression of research in this field. We will also assess various stakeholder perceptions of genetic research for childhood-onset psychiatric disorders, and examine ways in which more effective communication between research scientists and other stakeholder groups can be achieved.

Presentations:

Milner, L. Advocacy group involvement in ADHD and ASD research: progressive or passive? in ELSI Congress. 2011: Chapel Hill, NC.