Students Screened for Genetic Diseases Common Among Jewish Population
In 1970, there were 55 cases of Tay-Sachs Diseaseâ€”a genetic disorder common among people of Ashkenazi Jewish heritage and fatal to infantsâ€”in the United States. Just a decade later, in 1980, there were only five cases. This dramatic decrease has been attributed to the rise of genetic testing among those thought to be at risk for carrying the gene for Tay-Sachs and other devastating diseases.
On April 8, the Lois Victor Center for Jewish Genetic Diseases provided Haverford students with free genetic screenings for diseases with higher frequencies among an Ashkenazi Jewish population. The screenings were organized by Paul Bloch '09, who met representatives of the Victor Center (which is associated with Philadelphia's Einstein Medical Center) when he attended the General Assembly run by the United Jewish Communities (UJC).
“One key value in Judaism is â€˜Tikun Olam,' or â€˜saving the world,'” he says.“In other words, charity.” Bloch, who is interested in public health, adds that the tests help people understand the risks of having an unhealthy baby.“While testing does not force people to make certain decisions, it lets them know what their options are.”
“We are looking for carriers, people who are not affected, but whose risk is in passing the gene to their offspring,” says Adele Schneider, director of clinical genetics at Einstein Medical Center, who helped administer the screening at Haverford.“This is a case of knowledge is power.”
This type of testing is often expensive, but Haverford's screenings were offered free of charge thanks to the Melvin A. and Eunice A. Miller Foundation. The foundation funded the initiative under the umbrella of their organization New Linkages, which helps Jewish students at Haverford, Bryn Mawr and Swarthmore access their religious and cultural heritages by placing them with Jewish organizations that match their career or social justice interests. New Linkages collaborates with 8th Dimension, Haverford's Office of Community Service.
“With genetic screening, if you know ahead of time, you can plan differently,” says Eunice Miller.“Today, there are all kinds of different ways of having babies, and you can avoid anxiety while you're pregnant.”
The screening consisted of a simple blood test, routine paperwork, and genetic counseling. Those tested will receive their results six to eight weeks later.
In addition to Tay-Sachs, the Victor Center screened for eight other Jewish genetic diseases, including familial dysautonomia, which affects the automatic nervous system and can result in unstable blood pressure and poor growth.“It's like living in an unpredictable body,” explains Adele Schneider.
Because genetic screening can be a sensitive and controversial subject, many ethical questions aroseâ€”â€œquestions that should be asked,” says Paul Bloch.“When we explained to students what was going on, they were very open, welcoming and grateful.”
Forty-four studentsâ€”not only from Haverford, but also from the tri-college community and the greater Philadelphia areaâ€”pre-registered for the screening, and there were at least 20 additional walk-ins. In total, 81 people were tested. Among the Haverford students was Ben Zussman '08, who was screened in anticipation of his upcoming marriage.
“As a pre-med student, I knew a fair amount about the diseases already, but now I've learned a lot more,” he says.“There were many diseases they were testing for today that I've never heard of.”