This is an important and neglected area and the author clearly has expertise in the ethical issues involved. As a subspecialist in fetal medicine, I am struck by the number of couples who, having decided to continue with a pregnancy when faced with a very bleak or indeed lethal diagnosis, enquire about altruistic options. This subject is initiated by many (though certainly not all) couples in this situation – often at the point where postmortem examination options are formally discussed. At this stage of the discussion, couples may ask about whether they can contribute to research or teaching, but interestingly several couples have asked me specifically whether they can help other babies or children by organ donation. Clearly the potential does exist, in certain selected cases, for tissue or whole organ donation. Where there is an isolated lethal structural anomaly, for example, renal agenesis, other organs, such as the heart, may in fact be morphologically normal. Although the author uses ‘lethal fetal anomaly’, as his title, he in fact confines his discussion entirely to anencephaly.
I do not underestimate the clear ethical, social and indeed logistical hurdles to make any neonatal organ registry function, but there is surely a potential opportunity for couples to consider and plan any such course of action. Indeed, the time between diagnosis and birth, which is generally in the order of several months for many of these lethal anomalies, could provide an adequate period of time for reflection and decision-making, which cannot be said for other circumstances where a baby or child dies unexpectedly.