If you carried a gene that increased your risk of having an epileptic seizure, would you want to know? Do perceptions of stigma and discrimination against people with epilepsy affect interest in genetic testing for the disease?
Sara Shostak, assistant professor in the department of sociology, along with principal investigator Ruth Ottman, professor of epidemiology at Columbia University, and other collaborators were recently awarded a $2 million grant from The National Institute of Neurological Disorders and Stroke (NINDS) to learn more about these questions.
Ottman and Shostak have been working together since Shostak was a post-doctoral fellow in the RWJ Health & Society Scholars Program at Columbia. The new project will build on research they started in 2006, results of which were published in the September issue of Social Science and Medicine in the article "What's at stake? Genetic information from the perspective of people with epilepsy and their family members."
In their new research, a survey and clinical genetic testing will take place at Columbia and in-depth qualitative interviews and analysis will be done under a $200,000 subcontract at Brandeis.
While genetic testing is available for several epilepsy syndromes, Shostak says, very little data has been produced on the psychosocial impact of genetic information on people with epilepsy and their families. Research in this area is urgently needed, she says, because of the many challenges that come along with epilepsy, which, historically, have included severe stigma and discrimination. People with epilepsy report lower rates of marriage and reproduction and reduced health-related quality of life.
Currently approximately 25 genes have been associated with specific epilepsy syndromes. Shostak and Ottman's team will focus on autosomal dominant partial epilepsy with auditory features (ADPEAF).
"The intention of the in-depth interviews is to explore, in
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