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10/18/2017

Selective data collection – what do we know about the risks of IVF?

A recent article in Newsweek reports on a physician, Dr. Jennifer Snyder, who is calling for the formation of a registry of egg donors to help determine the risks to women who “donate” eggs to other women undergoing IVF for monetary compensation. Her motivation in calling for this registry was the death of her daughter at age 31 from cancer after donated eggs on three occasions. She points out that egg donors are commonly told that there are no known long-term risks of egg donation, but that the reason that there are no known long-term risks is that the risks of egg donation have never been studied.

The article reports that Alan Penzias, chair of the practice committee at the American Society of Reproductive Medicine, agrees that such a registry is needed, and states that “national reporting on IVF, including data on both mothers and babies, is required by law.” It is good that this representative of those who practice reproductive medicine is in favor of a registry to assess the risks of egg donation, but there is a problem with his statement about the current reporting that is done on IVF in the United States.

That reporting on IVF is done under the authority of the CDC by the National Assisted Reproductive Technology Surveillance System. According to their National ART Surveillance website what they measure to comply with the Fertility Clinic Success Rate and Certification Act is data about patient demographics, patient stature: medical history, parental infertility diagnosis, clinical parameters of the ART procedure, and information regarding resultant pregnancies and births. The outcomes data is limited to information about the percentage of IVF cycles that achieve pregnancy and achieve live birth and information on how many of those pregnancies are single or multiple gestations and how many are delivered prematurely or at term. No data is collected on the complications or ill effects that women who undergo IVF may experience, and no data is collected on either birth defects or any other adverse consequences other than prematurity, birth weight, and plurality for the infants born by way of IVF.

Dr. Snyder’s call for a registry for data on adverse effects experienced by women who donate eggs is absolutely necessary to be able to give women the information needed to be able to make an informed decision about being an egg donor. There is an urgent need for the same type of registry of adverse outcomes for women who undergo IVF and the children produced by IVF. It is inexcusable to expect women to consent to these procedures without knowing the risks because those who perform the procedures have failed to collect data about those risks.

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