Health Alert: Help Eradicate Jewish Genetic Diseases

On March 31, JSPAN was a co-sponsor of the symposium "Healthy Generations: Mobilizing Our Community to Prevent Jewish Genetic Diseases." The Albert Einstein Healthcare Network's Victor Center for Jewish Genetic Diseases, one of the sponsors of the symposium, is dedicated to eradicating genetically inherited diseases prevalent in the Ashkenazi Jewish community. The Center has asked JSPAN to help alert the community to its critically important work. It has been estimated that 1 in 4 individuals of Ashkenazi Jewish descent is a carrier of a gene mutation that could result in the birth of a child with a serious, life-threatening disease. The Victor Center provides genetic education, screening and counseling to healthy individuals at risk for being asymptomatic carriers. With a simple blood test, carrier screening is available to identify a wide spectrum of diseases. Most often the diseases occur in families with no prior history of the disease. Carriers are only at risk of passing the gene change on to their children. It is important to realize that while the diseases are more common in the Ashkenazi Jewish population, they also occur in other ethnic groups. On May 21, President Bush signed into law H.R. 493, the Genetic Information Nondiscrimination Act, which will protect Americans against discrimination based on their genetic information when it comes to health insurance and employment. The bill had passed the Senate unanimously and the House by a vote of 414 to 1. The long- awaited measure, which had been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination. The Victor Center hopes that passage of the Genetic Information Nondiscrimination Act will encourage more individuals who are planning to have children to get tested. The Center, which is located on the campus of Albert Einstein Medical Center, can be reached by calling (215)456-8722 or 1-800-EINSTEIN. For further information visit the website at www.einstein.edu/jewishgenetics. To read the Genetic Information Nondiscrimination Act in its entirety, click here. To read "Passage of Genetics Bill Welcomed as 'Civil-rights Milestone'" by Bryan Schwartzman of The Jewish Exponent staff, click here.