Society For Assisted Reproductive Technology To Create Egg, Sperm Donor Birth Outcome
There currently is no system in place to alert couples to problems in donors that could lead to genetic diseases or to prevent donors from providing eggs or sperm if they are found to have a genetic disorder, according to the Times. CDC requires fertility clinics to provide details about pregnancy outcomes, including the number of pregnancy attempts, the type of technology used and whether the treatment resulted in multiple fetuses. However, CDC does not collect data on individual donors or link their names to birth outcomes.
According to the Times, a registry would require donation agencies and fertility clinics to submit to CDC information about donors and surrogates, including Social Security numbers and birth dates, which would then be linked to results of drugs tests, tests for sexually transmitted infections and genetic screenings. The data would then be linked to birth outcome information supplied by obstetricians. Fertility clinics also would stay in contact with couples to see whether children born from such treatments develop genetic disorders. That information potentially would then be available to donor agencies when people apply to be donors and to clinics when couples seek to use a particular donor.
According to the Times, SART said it would create the registry after a Dec. 9, 2007, article in the Times that profiled the case of a woman named Alexandra Gammelgard, who donated eggs to at least four infertile couples using two or three agencies (Heisel, Los Angeles Times, 1/3). Gammelgard was informed by one of the agencies to which she donated that an infant born from her eggs has the often-fatal genetic condition Tay-Sachs. Neither Gammelgard nor the agency has attempted to inform other families who might have used her as a donor (Daily Women's Health Policy Report, 12/10/07).
Reaction
Some donation agencies and fertility specialists praised SART's efforts, while critics said such a registry could not adequately track donors, the Times reports. David Grainger -- a Wichita, Kan.-based fertility specialist and a member of SART's executive council -- said the registry will take some time to establish and likely will face significant obstacles. The registry's success would depend in part on whether SART and the American Society for Reproductive Medicine can persuade donors, physicians, agency directors and patients to cooperate, the Times reports. Some U.S. fertility experts have expressed concern that donors would be scared away if participation in such a registry were mandated like it is in the United Kingdom (Los Angeles Times, 1/3).
Reprinted with kind permission from http://www.nationalpartnership.org. You can view the entire Daily Women's Health Policy Report, search the archives, or sign up for email delivery here. The Daily Women's Health Policy Report is a free service of the National Partnership for Women & Families, published by The Advisory Board Company.
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