Project: Management of (suspected) harmful mutations in (sperm) donor conception: current practice, stakeholder experiences, ethical analysis and good practice recommendations

2022-01-01 – 2025-12-31

Abstract

Although basic genetic screening is an integral part of the sperm donor screening process in assisted reproduction, sometimes (suspected) harmful mutations are discovered after the donation, either in the donor or in donor-conceived persons. It is important that a system is in place that facilitates the reporting and registration of (suspected) conditions, can trace at-risk persons, enable communication when necessary and block donor sperm samples either conditionally, or completely. Although such systems are in place in Belgium, there is currently no transparency about current practices, no knowledge about the experiences of different stakeholders confronted with this unexpected genetic information and no thorough normative framework outlining the rights and responsibilities of the different parties involved. Also, there are no good practice guidelines for clinics and sperm banks confronted with these problems. This research project is a necessary and much overdue first step in filling these knowledge gaps through empirical research and ethical reflection, which will contribute to a normative framework within which clinics and sperm banks can operate when managing (presumed) harmful mutations in sperm donors.