Informed Consent for Egg Donors Won't Exist Unless We Track Donors' Health

By Judy E. Stern — October 1, 2015

Both a recent article in the Journal of Law, Medicine & Ethics and a related Ob.Gyn. News story have raised concerns about the risks of egg donation and the process of providing informed consent for donors.

Despite guidelines from the American Society for Reproductive Medicine and the Society for Assisted Reproductive Technology, clinical and monetary pressures can create conflicts for providers of reproductive healthcare between the needs of the egg donors and those of the couples to whom their eggs are donated — both of whom are often patients of the same providers.

The articles raise concerns that these conflicts may result in donors having an incomplete understanding of the risks and ramifications of stimulation to produce multiple eggs and retrieval of those eggs for donation.

Egg donation is a commonly used assisted reproductive technology (ART) procedure accounting for more than 12 percent of ART cycles in the United States. Conflicts can arise on several levels: donor recruitment; screening, consent and disposition decisions; ovarian stimulation; and post-stimulation monitoring.

Recruitment can involve misleading advertisements, which may not accurately convey the medical and emotional risks in the attempt to recruit sufficient numbers of young donors.

Screening and consent may present mutually opposing pressures, with clinicians pressed to encourage donors to continue the time-consuming and expensive screening process once begun — even at the cost of full disclosure.

Resource: We Are Egg Donors offers support for women considering providing eggs for fertility purposes or who have donated their eggs. Learn more from founder Raquel Cool.

Pressure to obtain eggs may result in donors receiving a more aggressive ovarian stimulation than is reasonable for a young donor. Post-procedure follow up may be absent or insufficient. Studies have shown that these concerns are warranted.

In order to fully inform donors of the risks of egg donation, we must have knowledge of the frequency and extent of those risks. Currently, both the Society for Assisted Reproductive Technology and the Centers for Disease Control and Prevention collect ART cycle data on the recipients of donated eggs and on individuals using their own eggs. This information has been used to study outcomes and some child health issues.

Unfortunately, information on donors is virtually absent from these databases. It is not even possible to determine the number of cycles a donor undergoes, and outcome data on cycle results such as ovarian hyperstimulation syndrome are not available. The only national data on long-term donor health is collected by the independently run Infertility Family Research Registry based at Dartmouth Medical Center, but this is a volunteer registry and donor participation has been limited.

Knowledge about health risks to donors could best be gained through a national registry that follows both the immediate treatment outcomes and the long-term health of the donors themselves. Although developing a national egg donor registry has been discussed by professional organizations, multiple impediments — including cost, time commitment and fear of litigation — have resulted in a failure to make this a reality.

In addition to providing information on health, this much-needed national egg donor registry could provide a centralized location for information on donors and offspring who, by mutual consent, would like to arrange to meet. As suggested in the Ob.Gyn. News article, this already has proved to be important for offspring of sperm donation. Without the encouragement of national organizations and their strong professional and financial backing, these efforts will not be possible and even those that have begun cannot continue.

The Journal article on conflicts of interest ends by stressing the importance of improved self-regulation of the donation consent process. The authors use as justification the fact that we have little “compelling evidence of harm” caused to donors by the donation process. While I agree, we must remember that absence of evidence of harm is not the same as proof of safety.

We must collect data on usage and health risks in order to fully understand what harms may be caused. We owe it to these young donors to develop sensible and complete guidelines for a responsible informed consent process. Only national collection of donor information will make this possible.

Judy E. Stern is a professor of obstetrics and gynecology at Dartmouth-Hitchcock Medical Center

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