O-272 Telling and talking about donor conception within the families: How can professionals help?

Abstract The general point of view on disclosure of the donor conception to the offspring experienced a major change over the years. From the outset, non-disclosure was imposed by medical professionals. Decades of debates followed, discussing if disclosure or non-disclosure would be in the best interest of the donor-conceived person, before the recommendation to disclose the donor conception to the offspring was integrated in professional guidelines such as those of ASRM (2013) and ESHRE (2024). This change in view was supported by research findings showing that late disclosure (and often discovery) has a negative impact on the wellbeing of donor-conceived people, that early disclosure is not burdensome for donor-conceived children (moreover, it is preferred by donor-conceived people), and that early disclosure is associated with better well-being of donor-conceived people during adolescence. Moreover, societal changes, such as the technological development of direct-to-consumer-genetic testing, have made non-disclosure impossible. Lastly, the framing of disclosure as a question concerning ‘the best interest’ of donor-conceived people has been replaced by a framework that information about one’s origin concerns a fundamental human right. Not only did the recommendation regarding disclosure/non-disclosure changed, also the knowledge about disclosure increased. While initially disclosure was often approached as a dichotomous act, research findings showed that disclosure occurs much more in layers. Moreover, disclosure is not a one-off activity, but (as preferred by donor-conceived people themselves) an ongoing conversation over the family-life course, that continues when the child grows up. Besides, disclosure is not a unilateral process in which only parents take up an active role, but it is an interactive process in which parent and child co-create their family-story. Lastly, disclosure does not only concern the origins of the child, but it is also a family-building story, in which parents formed their family in a different way they initially imagined. In relation to the actual disclosure process, studies have shown that parental confidence is generally associated with disclosure and a lack of confidence (including uncertainty around the language to use, the best way and time to disclose, and finding the information difficult to share) is associated with non-disclosure. A recent literature review showed that many participants across studies reported feelings of being unprepared, isolation and anxiety around the disclosure decision and process, and express a desire for support. Parents would like to hear experiences from other parents and to have access to resources, such as storybooks and movies, and networking opportunities for the donor-conceived people as they might enhance feeling comfortable with the disclosure process. However, support and advice were not always provided. This presentation reviews the latest existing empirical data regarding the disclosure-process (factors that might influence the process, outcomes, experiences of parents and donor-conceived people) and will especially address how, psychosocial as well as medical, professionals can support families in their ongoing conversation about their family-building, pre-, during and post-treatment. Furthermore, challenges and limitations of offering ongoing support will be discussed as well, based on an inquiry conducted in 10 jurisdictions.