Alignment between expectations and experiences of egg donors: what does it mean to be informed?

This study evaluated the retrospective perceptions of egg donors regarding information communicated about immediate and long-term risks during the process of becoming an egg donor, and the alignment of that perception with their experiences and expectations of egg donation. Data were collected using an anonymous online survey. Egg donors’ demographics, perceptions of being informed about immediate complications and long-term risks, and alignment between their expectations and experiences were analysed. In total, 375 current and former egg donors participated in an online survey about their decisions and experiences. Participants ranged in age from 18 to 57 years, with a median age of 24 years at first donation for compensated donors. The majority of the participants (81%) provided eggs in the USA, and 86.1% reported being compensated beyond direct reimbursement. Overall, 66% of egg donors surveyed reported feeling that their experiences matched their expectations based upon what they had been told during the informed consent process. While most participants (64.8%) felt well informed about potential short-term risks, 55.2% did not feel well informed about potential long-term risks. The findings indicate that while the majority of egg donors felt informed about immediate complications, there are gaps in knowledge about potential long-term risks. Results from this research provide insight into how egg donors understand risks and benefits, and can be used to improve counselling and informed consent forms and processes. The findings also indicate that longitudinal research on the health and well-being of egg donors is needed in order to improve informed consent.