I have to ask where does the money go? How much money goes to fund research into the disease of cystic fibrosis and how much is diverted to prenatal testing?
Now, more women are being tested as part of routine prenatal care, and many end pregnancies when diseases are found. One study in California found that prenatal screening reduced by half the number of babies born with the severest form of cystic fibrosis because many parents chose abortion. -
Gene testing spurs decline of some dire diseases
Are we contributing to eugenics when we support Shinerama? When asked today to contribute, I told the two young girls who stopped me that I could not on ethical principles because I didn't know where that money was going.
Cystic fibrosis occurs in babies with both parents carrying the gene for the disease. Even then, the chance is 1 in 4 of inheriting the disease. I can easily understand people's desire to eliminate this disease, since it claims most lives by the age of 37. Research has extended the life expectancy of those who suffer with the disease and I would hope that we will see even more results along this line in the future. But is that where the Shinerama money goes? I think people need to ask those questions before signing up for the cause.
Another inherited disease, Tay-Sachs, was found to be more common amongst Ashkenazi or Eastern European Jews. An interesting development in this disease is the formation of a group that tests people prior to marriage for the gene that carries the disease.
Ekstein, the rabbi, lost four children to it before founding Dor Yeshorim, a Brooklyn-based group that recruits Jews to be tested. Using confidential PIN numbers, they call a hotline to see if a prospective mate would be a risky match. The group has 300,000 members and tests for nine diseases, including cystic fibrosis.Rabbi Ekstein is concerned about ethical solutions to the problem, hence the testing prior to conception.
Eliminating disease is a noble goal but also "should give us pause," Lerner, the Columbia historian, wrote recently in the New England Journal of Medicine.
"If a society is so willing to screen aggressively to find these genes and then to potentially to have to abort the fetuses, what does that say about the value of the lives of those people living with the diseases?" he asked.
Once again, when we accept abortion as the solution for lives deemed not worthy of living, we make everyone's life unsafe. Once we accept one reason for killing someone, we will go on to accept another and another.
For now, I will keep my money for causes about which I have no qualms.