Study reveals gap in informed consent for egg donation
Globally, there is an increased demand for donor eggs in assisted reproduction. Some donors provide eggs with no compensation or little reimbursement; however, in the United States, the majority of those who provide eggs are paid, usually thousands of dollars per cycle. Despite the frequency of egg donation, there is a little information available about the immediate and long-term impact on the health and wellbeing of donors.
While the egg retrieval process is thought to be safe, it is still a medical procedure with inherent risks. Informed consent, ensuring a patient has the necessary information to make an informed decision before treatment, is crucial to the autonomous decision-making of egg donors. As there are no federal laws specifying informed consent processes for egg donation, there is substantial inconsistency that can lead to variations in understanding the risks and benefits among egg donors. Few studies have examined how egg donors themselves understand the information presented to them during the informed consent process.
New research sought to address current gaps in knowledge regarding how egg donors feel about the informed consent process and whether their experiences match their expectations based on the information they received. Researchers connected with former and/or current egg donors through an anonymous online survey. Around two-thirds of egg donors surveyed reported feeling that their experiences matched their expectations based upon what they had been told during the informed consent process. Of those who reported their donation experiences aligning with what they recalled being told during the informed consent process, many indicated greater satisfaction with the quality of the informed consent process.
Researchers also found that roughly two-thirds of donors felt well informed about the potential short-term risks of the procedure. However, over half of all donors surveyed did not feel well informed about long-term risks. In some cases, donors felt that the information they read through their own online research was more extensive than the information they received from the clinic, with one donor noting, “I only became aware of any possible complications or side effects once I did my own research.” In regard to long-term risks, those who felt uninformed reported being told either there are no long-term complications or that long-term risks are unknown, with one respondent saying: “I was told that ‘there is no evidence of long-term complications in the vast majority of donors,’ which I took to mean that it has been studied and complications were very rare. I’ve learned that what it actually means is that it has not been studied.”
These findings show that there is a gap in the informed consent procedures for egg donors regarding knowledge of potential risks. Importantly, these findings represent a large sample of donors from a range of clinics and agencies across different regulatory and medical donation contexts and should be used to improve counselling and informed consent procedures.
While these findings are helpful for the informed consent process, the lack of information about long-term effects of egg donation is a serious barrier to fully informed consent for potential donors. Establishing long-term research on the impact of egg donation would ultimately improve informed consent. Additional research is also needed to understand how providers can communicate the short- and long-term risks of egg donation given the gap in this research.