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Text is from the Hadassah Nurses Council
On Sunday, January 4th, 2009, The Philadelphia chapter of the Hadassah Nurses Council learned about Jewish genetic disease. We were privileged to haver as our guest lecturer Dr. Adele Schneider, Director of the Victor Center for Ashkenazic Jewish Genetic Diseases in association with Albert Einstein Medical Center. At this time, there are Victor Centers in two additional locations: Boston and Miami.
Dr. Schneider gave a comprehensive talk on the services provided at the Victor Center. Testing for Tay-Sachs disease as well as for ten more diseases, the Center provides a service committeed to the health and education of the Jewish community. Dr. Schneider is involved in research which has implications for the testing of genetic disease for the general community as well. Payment for testing is handled with compassion: the Center will not turn away a patient who is uable to pay… and please consider the gift of genetic testing for that young person in your life! The very best time to be screened is before pregnancy occurs.
Practicing nurses from Albert Einstein Medical Center as well as members of the Hadassah Nurses Council shared anecdotal experiences of their families affected by genetic illness. Issues raised included how to obtain the highest level of accuracy of testing methods, as well as how to correct the misinformation which may occur between consumers and physicians. Dr. Schneider emphasized that guidance is pro vided to every potential consumer of a genetic test, and that the follow up care and counseling is a hallmark of the services provided by the Victor Center.
Prevention of Tay-Sachs disease occurrence has improved significantly. In the 1970’s there were about sixty babies affected worldwide. Today, it’s three to five babies. Dr. Schneider is doing research on the feasibility of testing Tay-Sachs to the general community. Although it is considered to be a Jewish genetic diseases, the family background of anyone can be in question; advancements in genetic testing make testing of Tay-Sachs for everyone possible.
Dr. Schneider shared with us her enthusiasm for the work of the Hadassah organization, of which she is a proud member. She informed us that Hadassah members were crucial in the passage of the Genetic Information Nondiscrimination Act (GINA), passed by Congress in 2008. GINA makes it illegal for employers and health insurers to discriminate based on an employees or insured’s genetic information.
