Tay-Sachs is an inherited, degenerative disease which attacks primarily Jewish babies and results in their death by the age of five. There is no cure, but the disease is preventable through careful genetic counseling. Carrier screening and amniocentesis for prenatal diagnosis of birth defects are now common procedures. Considerable national concern was expressed recently when the March of Dimes announced it is cutting funds for genetic service programs, which include screening, prenatal evaluation and counseling.
According to a story in the March 24 edition of the Jewish Exponent by staff writer Jane Biberman, Dr. Laird Jackson, head of the Tay-Sachs Prevention Program, headquartered at Philadelphia’s Thomas Jefferson University, said his operation will not be affected by the cutback. Jackson, according to the Exponent, explained his program is funded solely by the Delaware Valley chapters of the National Tay-Sachs and Allied Disease Association, and never relied on March of Dimes support. However, he is concerned about funding for other genetic counseling and diagnostic services in other communities.
“I suspect that the March of Dimes decision was influenced in part by opponents of abortion, the pro-life organizations which have been so vocal. To threaten a woman’s right to have a healthy child is terribly inconsiderate of human rights. Since amniocentesis is equated with abortion, a public outcry from those who support such services will be helpful.”
Dr. Eugene Grebner, director of laboratories of the Tay-Sachs Prevention Program, believes the March of Dimes decision may have more far-reaching effects. “If the pro-life groups are responsible for the March of Dimes withdrawal of support, and I believe they are, then their influence shouldn’t be underestimated. Abortion lies at the heart of our program, and if these pro-life groups can prevent abortion they can also kill the program. Even if money is forthcoming from the National Genetic Diseases Act (P.L. 94-278). Congressmen can be pressured.”
Urging the public to make its wishes known, Grebner added: “The pro-lifers are outnumbered, but they are very vocal. The majority should speak up. I get very angry when they profess to have better moral standards than I do. It angers me personally to think they could succeed in eliminating abortion. They have no idea what it is like to have a dying Tay-Sachs child foisted upon them.”
DENIES TERMINATING SUPPORT
Larry Wasser, executive director of the Philadelphia Chapter of the March of Dimes, denies that the organization is terminating support of genetic programs or submitting to pressure by antiabortion forces. He explained that it is March of Dimes policy to provide “seed” money for new programs, as it did in 1970 when it funded genetic services programs.
“Grants are diminished once a program becomes viable, and funds are used for new programs.” Wasser said. “Now we are putting money into neonatal morbidity research and prenatal clinics for high-risk pregnancies. We are still supporting genetic programs. The lessening of emphasis on genetic services in no way indicates changes in focus of genetic research activities.”
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