Abstract
Objective: To study whether parents are disclosing donor conception to their children and what their experiences of disclosure are.
Design: Cross sectional survey, inclusive of all parents of donor-conceived children born 2006-2016 following clinic-based sperm, egg, or embryo donation in New Zealand, conducted over 6 weeks from June 2024.
Subjects: Parents with a donor conceived child aged 7-18 years were invited to complete an anonymous, online survey. Parents with more than one donor conceived child, were sent a single invitation and asked to complete the survey with reference to their eldest eligible child.
Exposure: Parents with a donor conceived child born following the introduction of legislation in 2005 mandating donors be identifiable.
Main outcome measures: The survey included questions about disclosure decisions and experiences, including familiarity with legislation and support services accessed; Quantitative data were statistically analysed using Stata 17BE. Qualitative data were analysed drawing on Braun and Clarke's thematic analysis steps.
Results: 381 responses from 1317 invitations; 7 were not eligible and 374 responses were included in data analysis (response rate 28.4%). Overall, 86% of parents had disclosed, while 12% had not yet told but planned to. No differences in disclosure were found across donor (clinic/family/friend), donation type, or having current access to donor identifying information. While most parents felt comfortable with disclosure, 23% had at least some concerns about disclosure/use of donor conception, and 25% reported receiving a mixed or negative reaction from their child. Most parents (71%) had not had professional support to disclose. Qualitatively, themes highlighted belief in the rights of children to access their genetic information, concerns around stigma and the impact of donor conception on parent:child relationships, and the absence of support post-donation.
Conclusion: Although most parents who answered the survey had disclosed, these results represent incomplete disclosure of donor conception among parents of donor conceived children in New Zealand. Results may not be representative given that parents who are open about donor conception may be more likely to participate in research on disclosure. Counselling services should be made available beyond those provided in the fertility treatment period to support parents in disclosing.