Egg donors report lack of follow-up for medical updates from clinics
Oocyte donors’ physical outcomes and psychosocial experiences: A mixed-methods study. (Adlam, 2025)
Adlam, K., Koenig, M. D., Patil, C. L., Steffen, A., Salih, S., Kramer, W., & Hershberger, P. E. (2025). Oocyte donors’ physical outcomes and psychosocial experiences: A mixed-methods study. Fertility and Sterility. https://doi.org/10.1016/j.fertnstert.2024.12.019
Geographic Region: United States
Research Question: What are the physical outcomes and psychosocial experiences of oocyte donors after donation?
Design: This was a cross-sectional mixed-methods survey study using an anonymous online survey from June to July 2021. The study combined quantitative measures with qualitative open-ended responses and used validated psychological assessment tools.
Sample: 363 participants who had previously donated eggs between 1983-2021. Three age cohorts were studied, representing different life stages: 22-34 years (n=150), 35-49 years (n=142), and 50-71 years (n=70). Most were White (93%), married (59%), and had donated an average of 3.3 times. 77% used anonymous donation, 19% were open-identity donors, and 3% were known donors. The average time from initial donation to study participation was 13.75 years, with the longest follow-up being 38 years. Participants were recruited primarily from the Donor Sibling Registry (84%) and Facebook groups (16%).
Key Findings [Editor’s note: This summary focuses on only the results related to attitudes about donation and offspring.]
‘‘My status as an egg donor is very important to my identity. Though I donated anonymously, I feel a connection to the resulting offspring and families raising them, and that connection, although invisible, is of the utmost importance to me.’’
Although most donors (91%) reported positive overall psychosocial experiences, 17% reported that donation did cause anxiety, depression, or emotional distress. Anonymity was the most frequent reason given in open-ended responses. One participant stated, ‘‘Not knowing whether I have biological children is a very uncomfortable feeling. The clinic I used was extremely strict about not telling the donor anything at all, and I think that is unfair.’’
Donors wanted to be able to share important health updates that could affect offspring, but 94% reported never being contacted by clinics for medical updates, despite 25% having important health changes to communicate. When donors tried to report significant health developments, they expressed frustration that this information couldn't reach the children. One participant said: "I wish I had advocated for myself better...The clinic was extremely dismissive of me when I tried to report a significant development in my health that I think the offspring should know about."
Limitations The study had significant recruitment bias since 84% of participants came from the Donor Sibling Registry, indicating they desired contact with offspring. This likely inflated findings about wanting less anonymity and may not represent all egg donors. Other limitations included 49% response rate, retrospective design with potential recall bias, predominantly White participants, and self-reported medical information.
Applications: Clinics, banks, and matching programs should establish systems for ongoing health information sharing, improve post-donation communication, and recognize donors as deserving of continued care and support.
Funding Source: University of Illinois Chicago's Seth and Denise Rosen Memorial Research Award
Lead Author: Kirby Adlam is a researcher in the Department of Human Development Nursing Science at the University of Illinois Chicago's College of Nursing, focusing on reproductive health outcomes and experiences. No personal connection to donor conception was identified in available information.
Regulatory Context
There are no comprehensive federal laws regulating gamete donation or donor conception in the U.S. The process is largely self-regulated by the fertility industry.
The Food and Drug Administration (FDA) does have some oversight, primarily related to the screening and testing of donors for infectious diseases.
The American Society for Reproductive Medicine (ASRM) provides ethical guidelines and recommendations for donation practices. However, these are not legally binding.
There are no legal limits on compensation for donors. A 2011 court ruling (Kamakahi v. ASRM) determined that price caps on donor compensation violate antitrust laws.
ASRM recommends a minimum age of 21 for gamete donors, but this is not legally mandated.
The U.S. does not have laws prohibiting anonymous donations.
Some states have enacted their own laws regarding aspects of assisted reproduction and parentage, but these vary widely.
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