Rep. Joshua Eilberg (D. Pa.) announced today that he is sponsoring legislation to establish a national program for the diagnosis, control, and prevention of Tay-Sachs disease. “This-inherited disease will affect one out of every four children that are born to parents both carrying the mutations and its highest frequency occurs among Jews of Eastern European descent,” Eilberg said. He noted that “recent developments make it possible to identify parents carrying the mutation leading to the birth of a Tay-Sachs child.”
The bill, the National Tay-Sachs Screening and Counseling Act, is designed to inform the public and doctors of the nature, existence and means of preventing Tay-Sachs disease. It would provide federal funds for voluntary screening programs and genetic counseling for those parents of child-bearing age.
Eilberg said the program would provide for an inexpensive blood test to identify parents carrying the gene mutations which cause the birth of a Tay-Sachs child. Couples found to be carrying these mutations would then be advised not to have children or to have the pregnancy closely watched by physicians.
This legislation, would provide funds for literature concerning the prevention and treatmentof Tay-Sachs disease and would establish health care programs for use in administering voluntary screening and counseling programs of the disease. “It is important to note,” Eilberg said, “that this is a one-time Federal expenditure. The program will pay for itself by the minimal payments of those persons voluntarily taking the screening tests.”
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