Parental disclosure to offspring created with oocyte donation: intentions versus reality

Abstract STUDY QUESTION Do parents with children created through oocyte donation (OD) follow through with their original intentions regarding disclosure to their offspring, and if not, why not? SUMMARY ANSWER Although 43% of this study population had disclosed to their offspring as intended, 39% had delayed disclosure because of uncertainty about how and when to disclose. WHAT IS KNOWN ALREADY Previous research studies have primarily investigated the intentions of families regarding disclosure to offspring conceived with gamete donation, but have not focused on what actually occurs in the disclosure process. STUDY DESIGN, SIZE, DURATION Data from 72 subjects were collected utilizing a 52-item questionnaire developed by the authors from January to May 2012. This cross-sectional hypothesis-generating pilot study utilized descriptive statistics, including frequency and percentiles in order to characterize survey responses. PARTICIPANTS/MATERIALS, SETTING, METHODS A total of 459 families who delivered a child (or children) after using OD between 1992 and 2003 were invited by mail to participate. The parents were invited to a 1-day, professionally led seminar on issues about oocyte-donation and disclosure. The study, performed at a large university-based fertility clinic, included 72 parents, representing 46 families and 66 children ranging in age from 7 to 19 years. MAIN RESULTS AND THE ROLE OF CHANCE The findings indicate that 43% of the study population disclosed to their offspring as intended, 39% still intend to disclose, 9% are uncertain and 9% do not plan to disclose at any time. The average age of children at the time of disclosure was 5.5 years. The average age of children at the time of data collection was 13 years. Primary reasons for disclosure were the child's right to know, the desire to be open and honest, and the notion that family secrets are harmful. For families who still intend to disclose, the average age of the offspring was 11 years and primary reasons for delayed disclosure included ‘never finding the right time’ and uncertainty about how and when to disclose. An unanticipated finding was that delayed disclosure among those who intend to tell offspring resulted in heightened levels of parental anxiety about disclosing to older children. Demographic data showed no associations with disclosure or non-disclosure to offspring. The response rate to participation was 12%. LIMITATIONS, REASONS FOR CAUTION Limitations of this study include a low