NEW YORK (GenomeWeb) – The Center for Research on the Ethical, Legal and Social Implications (ELSI) of Psychiatric, Neurologic, and Behavioral (PNB) Genetics at Columbia University has received a $1.1 million renewal grant from the National Human Genome Research Institute to explore the effects of new genetic knowledge on individuals with autism spectrum disorder and their families.
Over the next four years, Columbia University's Irving Medical Center (CUIMC) will pinpoint the impact of personal genomic information given to individuals already diagnosed with autism and their family members. The study builds on research that Columbia has been conducting since 2013 as a full Center of Excellence in ELSI Research.
According to Columbia, the center's researchers will use surveys and interviews to examine reactions to genomic tests results, including the "impact on views of normality, capacity, responsibility, treatability, and patient prognosis, along with systematic consideration of the consequences for decision-making and life planning."
At the same time, the researchers noted that the study will implement a "systematic approach to identifying emerging issues in the ELSI of PNB genetics, alerting ELSI researchers to the issues, and selecting a subset of issues for more intensive exploration."
To perform the research, CUIMC will partner with the SPARK study, an effort by the Simons Foundation to sequence the genomes of 50,000 people with autism and their parents.
"People with neuropsychiatric and behavioral conditions increasingly will be receiving test results demonstrating genetic variants related to their disorders," CUIMC director Paul Appelbaum said in a statement.