O-230 The ethics of disclosing reported conditions in donor-conceived offspring to recipients of the same donor
Authors: Accoe D , Pennings G , Janssens S , Vanden Meerschaut F , Mertes H 
Published: July 2024

Study question

To what extent should new genetic risk information, identified after donation, be disclosed to recipients?

Summary answer

Withholding new genetic risk information from donor sperm recipients may sometimes be ethically justified or even preferred.

What is known already

In some cases, donor-conceived persons are born with (suspected) harmful genetic mutations. These occurrences may flag increased genetic risks for others if the donor is used for multiple recipients. Genetic conditions can also emerge in donors or their families after donation. Current guidelines, such as those established by the European Directorate for the Quality of Medicines & HealthCare, recommend contacting recipients “in the case of a diagnosis that may seriously affect a child’s health”. However, the specific timing of such disclosures and the circumstances under which (or even whether) information may be withheld are unclear.

Study design, size, duration

This normative analysis draws initial insights from empirical data obtained from a quantitative study into current practices of fertility clinics and extends to a comprehensive review of academic literature and international guidelines. It evaluates current practices and explores the justifications for (not) informing recipients about (possible) genetic risks linked to their donor, guided by bioethical principles.

Participants/materials, setting, methods

In June 2023, an electronic questionnaire was sent to all fertility clinics in Belgium to obtain information on current practices regarding the management of genetic mutations in donor treatment. The responses from 15 clinics provided empirical insights that served as an impetus for the subsequent normative analysis. This analysis integrated the findings with normative considerations using the ‘wide reflective equilibrium’ method.

Main results and the role of chance

Our findings revealed considerable diversity in current practices. Some clinics always informed recipients of newly identified genetic risks (possibly) related to their donor, while others based their decision on various factors. The main arguments for disclosing this information are clinical utility (beneficence) and respect for the recipient’s autonomy. Withholding health-related information can be harmful, especially if it impedes diagnosis and treatment. Moreover, when sperm samples are reserved for additional children from the same donor, disclosure facilitates better-informed reproductive decisions. Conversely, non-disclosure is sometimes justified on the same grounds. If the recurrence risk is absent or equivalent to the general population risk level, disclosure could cause undue alarm and overtreatment. These harms may outweigh the marginal benefits of (immediate) disclosure, particularly for unconfirmed, late-onset, non-severe, and untreatable conditions. Respecting autonomy also implies recognizing the right not to know, by allowing recipients to prespecify the type of information they wish to receive (e.g., untreatable conditions). However, other factors can complicate this assessment. When early diagnosis is crucial, confirming the donor’s link to the reported condition or determining the recurrence risk may take too long. Additionally, a thorough risk analysis becomes more intricate if insemination is planned, embryos are created, or during pregnancy.

Limitations, reasons for caution

This analysis focuses on cases with anonymous donors and excludes situations involving identifiable and known donors. If the recipient and donor know each other, a distinct set of ethical considerations and duties may emerge.

Wider implications of the findings

The need for a nuanced, context-sensitive ethical framework for the disclosure of (potential) harmful genetic mutations in a donor to recipients of donor sperm is highlighted. Such a framework could inspire policy development and support ethical decision-making in fertility treatments.

Trial registration number

Not applicable