An international study is transforming how clinics prepare women for the complex journey of egg donation
International expert participation
Multidisciplinary team
Evaluated for consensus
Egg donation is no simple procedure. Donors undergo weeks of hormone injections, invasive surgeries, and face risks like ovarian hyperstimulation syndrome (OHSS)—a potentially life-threatening condition affecting up to 14% of cycles 2 5 . Yet studies reveal widespread gaps in risk awareness, with many donors underestimating medical, legal, and psychological implications 1 . This consent crisis sparked a bold initiative: the first global effort to define what every donor must understand before signing on the dotted line.
Valid informed consent isn't just a signature—it requires:
Prior tools like the "Egg Donor Informed Consent Tool" had critical flaws. Developed solely with U.S. professionals and donors, they overlooked international perspectives and skipped vital topics like legal rights and alternative hormone protocols 1 .
In November 2023, researchers launched a 3-round Delphi study—a structured method to build consensus among experts through iterative feedback. The team assembled 35 specialists across 14 countries: fertility doctors, ethicists, psychologists, lawyers, and experienced donors 1 4 .
| Expertise | Countries Represented | Total Participants |
|---|---|---|
| Fertility Medicine | USA, UK, Spain, Belgium | 12 |
| Bioethics/Law | Canada, South Africa, Japan | 8 |
| Psychology | Australia, Brazil, France | 6 |
| Experienced Donors | Multiple regions | 9 |
After Round 1, striking patterns emerged:
| Information Item | Relevance | Moral Necessity |
|---|---|---|
| Right to withdraw consent | 100% | 100% |
| Requirement for retrieval surgery | 100% | 89% |
| Legal status of donated eggs post-procedure | 100% | 78% |
| Need for ovarian stimulation hormones | 100% | 76% |
Surprisingly, entire categories like financial aspects and multiple donations achieved full relevance consensus—yet two items failed moral necessity. For example, disclosing exact compensation amounts was deemed relevant but not ethically mandatory by some experts 1 .
Items sparking fierce debate (CVI<0.78):
"Knowing my eggs might create 20 siblings affects my choice—that's not trivia."
"Overloading forms risks donor fatigue."
| Topic | Relevance Score | Key Controversy |
|---|---|---|
| Offspring genetic testing | 62% | "Do donors need this level of detail?" |
| Embryo disposition rules | 58% | "Clinic-specific, not donor-concerning" |
| Psychological risks | 65% | "Essential vs. optional counseling" |
| Tool | Function | Study Application |
|---|---|---|
| Likert Scale | Rates item relevance (1–4) | Quantified expert judgment on 118 items |
| Content Validity Index (CVI) | Measures consensus level (0–1) | Set at ≥0.78 for "essential" inclusion |
| Dichotomous Scale | Yes/No moral necessity scoring | Identified ethically non-negotiable items |
| Delphi Rounds | Iterative feedback refinement | 3 rounds to resolve disagreements |
| Structured Comment Fields | Captures qualitative insights | Explained scoring disagreements (e.g., psychological risks) 1 4 |
With Rounds 2 and 3 concluding in 2024, the team aims to publish a consensus-driven "Essential Information Checklist" by 2025. This could revolutionize clinic practices by:
"Our goal isn't longer forms—it's smarter ones. If donors don't understand their rights or risks, we've failed ethically, no matter how many babies are born."
As egg donation demand grows—now accounting for 18% of U.S. IVF births—this research couldn't be timelier 5 . For the first time, the voices of donors, doctors, and ethicists are converging to ensure women aren't just informed, but understood.