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

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 response rate due to potential participants being lost to follow-up and to the possibility that families choosing non-disclosure did not respond to the invitation. This lack of a more effective recruitment strategy may have resulted in the smaller, self-selected study population. Additional limitations included the lack of heterogeneity of our population, any confounding factors the seminars may have had on the choice to participate in the study and on responses to the questionnaire, and the lack of a specified anxiety measurement. WIDER IMPLICATIONS OF THE FINDINGS Families disclosing to children by the age of 8 reported the lowest levels of conflict regarding the disclosure process and the highest levels of satisfaction at having disclosed early. The findings are consistent with, and add to, a growing body of literature on disclosure in donor-assisted reproduction. The authors recommend that fertility programs and mental health providers better assist OD parents with disclosure issues by recommending early disclosure for those who plan to tell, and by providing on-going follow-up and support to ensure that disclosure decisions are implemented as originally intended. STUDY FUNDING/COMPETING INTERESTS Partial study funding was received from an educational grant from Ferring Pharmaceuticals, Inc. There are no conflicts of interest to declare.