Troubled by the health history and backgrounds of some anonymous egg and sperm donors, leaders in the fertility industry have said in recent weeks that they would create a national registry to track donors and birth outcomes.
In response to a Dec. 9 article in The Times about a child born with a terminal genetic disease, representatives from the Society for Assisted Reproductive Technology, a fertility industry organization, said they intend to record the histories of donors and surrogate mothers to help prevent such tragedies.
The Times article was about a girl from Rancho Mirage, conceived with the help of an anonymous egg donor, who was born with Tay-Sachs. She is nearly 2, and the neurological disease probably will kill her before she turns 5.
The gay couple who chose the donor did not know that she was a carrier of the Tay-Sachs mutation, nor did the donor herself. For a child to get the disease, both biological parents must be Tay-Sachs carriers. One of the men, whose sperm was used to fertilize the donor's egg, also carried the mutation but was unaware that he did.
After learning about the child with Tay-Sachs, neither the egg donor nor the agency that hired her attempted to contact the other families and agencies that used the donor's eggs. Some families may have embryos not yet implanted.
No system exists to alert couples to such problems or to prevent donors from continuing to provide eggs or sperm after they have been found to have genetic disorders or other problems.
"If you have a case of a donor who is a carrier for Tay-Sachs, there is no mechanism in place right now to let other parents and agencies know. We need to change that," said Dr. David Grainger, a Wichita fertility specialist and a member of the reproductive technology society's executive council.
Grainger warned, however, that such a tracking system faces significant obstacles and probably will take some time to put in place.
Egg and sperm donors are for the most part anonymous. The Centers for Disease Control and Prevention requires fertility centers to provide detailed data on pregnancy outcomes: the number of attempts at pregnancy, the type of technology used, whether the treatment resulted in multiple fetuses.
But the CDC, which works closely with the reproductive technology society in gathering fertility data, does not keep track of individual donors' histories, diseases or other problems, nor does it link their names to outcomes.
