Assessing Views on Genetic Testing in Autism

Research Study

We are researchers at Columbia University Irving Medical Center, and would like to invite people with autism to participate in a confidential interview as part of a research study. If you decide to participate, we would ask about your views on autism and its causes. as well as on your daily life experiences and plans for the future. The interview can be scheduled at your convenience and will be conducted by phone or videoconference, as you choose. You will be compensated $50 for your time in completing the interview (approximately 1 hour). If you have any questions or are interested, we can send you further details of the study. Please contact Dr. Robert Klitzman by email at rlk2@cumc.columbia.edu to learn more or to participate.

As background, our NIH-funded research study is exploring people’s attitudes and opinions about autism and its possible causes. Recently, genetic testing for autism has begun. We are examining views and responses to genomic testing in autism, interviewing people with autism and parents of children with autism in the SPARK study who have undergone genetic testing, to understand their views of genetic testing. To comprehend a broader range of perspectives, we will also be interviewing in-depth 20 adults with autism who are members of autism advocacy organizations and are not participating in the SPARK study. SPARK participants may be self-selected for a greater willingness to view autism as a disorder with a genetic basis, which may affect their reactions to the results of genomic testing. SPARK participants are thus likely to be representative of persons who are willing to have genomic testing. However, it will be important to have other perspectives on these issues. In particular, some people with autism may view the condition not as a disorder, but as reflecting “neurodiversity.” Their voices are an essential part of the picture that we want to comprehend.

Thank you.
Robert Klitzman, MD
Paul Appelbaum, MD

email: rlk2@columbia.edu

Published on: Dec 11, 2020 at 19:11

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