Legitimacy of a PGD: Severity and risk of a genetic disease

In November 2020, the German Federal Administrative Court delivered a verdict which concretises the conditions for a PGD in Germany. In 2016, the appellant, a Bavarian woman, received notice of rejection from the responsible ethics commission. Hereinafter, she enforced a claim by legal action and won the case in 2020 after judicial review. 

Although the German embryo protection act (ESchG) does not precisely explicate what a “severe” genetic disease is, Duchenne muscular dystrophy is adduced as example for an admissible case in §3 ESchG. According to the Bavarian ethics commission, the woman in question was not entitled to a PGD since the muscle disorder of her partner, a weak form of Type 1 myotonic dystrophy, was not classified as “severe” in comparison to Duchenne muscular dystrophy. The German Federal Administrative Court passed a judgement which concludes that a Duchenne muscular dystrophy cannot be consulted as a measure of a “severe” genetic disease. Concomitantly, the Court reversed the Bavarian judgement by arguing that the couple’s progeny indeed has a “high” risk for a “severe” genetic disease.

Since the verdict in November 2020, comparing genetic diseases to Duchenne muscular dystrophy in order to examine whether the conditions for a PGD are met is explicitly inadmissible. Besides the decision of the German Federal Administrative Court not to grant ethic commissions a scope of assessment, implying that their decisions fall within the range of judicial review, other concretisations resulted from the verdict. Thus, the admissibility of a PGD has to be considered on a case-by-case basis. Furthermore, additional aspects have to be taken into consideration, such as whether a woman already had to terminate a pregnancy after a PGD or whether a couple already has a child with a “severe” genetic disease. For instance, the German Federal Administrative Court also took into account that the partner in question has already fallen ill because of his genetic disposition. 

For further information regarding the verdict of the German Federal Administrative Court in November 2020, see also:

Bundesverwaltungsgericht (2020): Präimplantationsdiagnostik bei Muskelkrankheit Myotone Dystrophie Typ 1 im Einzelfall zulässig. Pressemitteilung Nr. 63/2020 vom 5. November 2020, Leipzig. Online Version [26. November 2020] (German) 

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