Navigating the use of preimplantation genetic testing: a retrospective analysis of 15 years of the Dutch National Indications Committee for PGT

Abstract

Preimplantation genetic testing (PGT) as a reproductive technology to prevent the transmission of genetic anomalies to offspring has been available for decades. In the Netherlands, a National Indications Committee was tasked with guiding decisions on using PGT from 2009. The multidisciplinary Committee employs a per-indication approach for evaluating conditions caused by specific pathogenic variants, using a decisional framework, and arrives at its advice through discussion. This paper reflects on the Committee’s journey in safeguarding the ethical and societal acceptability of the use of PGT in the Netherlands. We performed a quantitative and qualitative analysis of relevant documentation of the Committee, issued between 2009 and 2024. The Committee advised positively on applying PGT for 134 of 192 (70%) indications. Its advice was based on the criteria ‘severity and nature of the disease’, ‘risk’ and ‘treatment options’ for the majority of indications. Only in a few cases, the Committee make a normative statement about severity. There was no trend observed in requests over the years and the Committee’s modus operandi remained consistent. In 15 years, the Committee has shaped the application of PGT for a broad variety of genetic conditions. Through its per-indication approach, it has been able to assess a complex interplay of disease characteristics and provide consistent guidance to medical practitioners in decision-making about the use of PGT. It has served as a robust model to safeguard the ethical and societal acceptability of PGT for a future in which new and rare genetic conditions will continuously be identified.