By a GenomeWeb staff reporter

NEW YORK (GenomeWeb News) Researchers from Brandeis University and Columbia University plan to use a $200,000 grant to survey and investigate public attitudes about taking genetic tests for epilepsy risk, Brandeis said this week.

Funded through a $200,000 sub-contract under a grant from the National Institute of Neurological Disorders and Stroke, the project will involve in-depth interviews and analysis and clinical genetic testing.

In the first part of the effort, the researchers will survey 1,053 individuals from 115 families to evaluate whether they would like to take genetic tests, and what they see as the benefits and downsides of testing for risk, as well as their views on how the stigmatization of epilepsy could affect the quality of their lives.

The researchers also will offer clinical genetic tests to individuals from 21 families containing 195 individuals with an uncommon form of epilepsy called autosomal dominant partial epilepsy with auditory features, or ADPEAF.

Half of these families were previously found to have specific gene mutations, but they have never been offered their individual results or the chance to engage in linked discussions about their views.

"The intention of the in-depth interviews is to explore, in much greater depth than can be done in a survey, what genetic information actually means in peoples' lives and how they plan to make use of it," Sara Shostak, assistant professor in the department of sociology at Brandeis, said in a statement.

In previous research, Shostak found that people are concerned about genetics-related issues when they think about future generations and having families. In addition, she found that people with epilepsy and their families hope that genetic information about the disease could help to lessen the stigma and discrimination by influencing public understanding about the disease.

Currently, around 25 genes have been associated with specific epilepsy syndromes.

More here:
Brandeis Leads Study of Attitudes on Genetic Tests for Epilepsy