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Professor Shostak among recipients of grant to research epilepsy

By Sara Dejene
On March 12, 2012

The National Institute of Neurological Disorders and Stroke awarded Prof. Sara Shostak (SOC), professor of epidemiology at Columbia University Ruth Ottman and other researchers two million dollars in funding to investigate the role of genetics in epilepsy, according to a Feb. 28 BrandeisNOW press release.

In an email to the Justice, Shostak wrote that she was "delighted and honored" to be among the recipients of the grant.

"Dr. Ruth Ottman, the [principal investigator], and I have been collaborating for several years, and it's exciting to be able to continue our work together," she wrote.

The research will be an extension of previous work Shostak and Ottman have done, according to the press release.

In this study, Shostak and other researchers will interview 1,035 participants from 115 families with members who are affected by epilepsy. They will ask participants whether or not they would like to undergo genetic testing and what they think the potential advantages and problems would be. Then members of 21 families containing individuals affected by autosomal dominant partial epilepsy with auditory features will be offered testing.

The research will be split between Brandeis and Columbia, according to the press release. While genetic testing and surveying will be conducted at Columbia, interviews and analysis under a $200,000 subcontract from Columbia to Brandeis will be performed at the University.

Last September, Ottman and Shostak, along with candidate for a Ph.D. in sociology Dana Zarhin, published qualitative results of interviews with 40 individuals who came from families with members affected by epilepsy and had participated in epilepsy genetic research. According to the article, which was published in the journal Social Science & Medicine, they found that the participants felt that genetic testing for epilepsy had both benefits and drawbacks.

"Most participants said they would have genetic testing if it were offered," wrote the authors in the paper. According to the paper, participants felt that genetic testing would offer useful information about epilepsy in their family and the risk their potential offspring have of being affected by epilepsy. However, participants also acknowledged a stigma surrounding epilepsy and "pressure" to alter choices regarding their possible offspring based on knowledge gained from genetic testing.

Shostak also wrote that she and her colleagues, Jeremy Freese, professor and chair of the sociology department at Northwestern University; Bruce Link, professor of epidemiology and sociomedical sciences at the Columbia University Mailman School of Public Health; and Jo Phelan, professor of sociomedical science at the Mailman School also investigated "whether, when, and how people refer to genetics as a way of explaining differences between individuals" and published those results in the March 2009 issue of Social Psychology Quarterly.

According to the paper, many individuals—regardless of socio-economic standing, race or political views—believe that genes are responsible for "health and social outcomes."

Both their previous and current research focuses on the "psychological impact" genetic testing for epilepsy has on families rather than the genetic testing itself, according to the press release.

Shostak wrote that she hopes her work will speak for individuals affected by epilepsy and their families when researchers form clinical genetic testing guidelines and discussions about "potential costs and benefits."

"I strongly believe that people living with epilepsy offer a kind of expertise to these deliberations that is essential to really understanding what genetic information means in every day life," wrote Shostak.

In an email to the Justice, Chair of the Sociology department Prof. Karen Hansen wrote that the grant "is a great honor and a testament" to Shostak's work.


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