"Wow, this could be massive": Donor-Conceived Families Experience with Unexpected Recontact for Risk of Inherited Cardiac Conditions

Introduction: Recontacting families post-gamete donation, after a genetic diagnosis is made in the donor, can create complex challenges for healthcare providers and families. However, there is little literature that explores the family experience. This study aimed to explore the experiences of parents and donor-conceived young people navigating the recontact process and undergoing predictive genetic testing for an inherited cardiac condition. Methods: Semi-structured interviews were conducted to explore participants' experiences in unexpectedly being recontacted and undergoing predictive genetic testing for an inherited cardiac condition. Interviews were recorded and transcribed verbatim. A reflexive thematic analysis was performed. Results: Thirteen participants agreed to be interviewed, nine were parents and four were donor conceived young people. Four overarching themes were identified: (1) Out of the Blue, (2) A ripple effect on the family, (3) Calm after the storm, (4) Beneath the Ripples: the psychological impact. Discussion: Interviews provided insights into fertility services recontact and the predictive genetic testing process. From the themes, we conceptualize a ripple effect model. Findings highlight how cardiac genetics and fertility services are evolving, and the critical role of genetic counselors. The recontact process affects the entire family. However, most participants adapted and moved forward from this event.