Beyond the fetal patient: The ethics of fetal treatment for down syndrome

The field of fetal therapy has seen important changes in the past decades (Deprest et al., 2011). With improving technology, there has been a shift away from high risk ‘open fetal surgery’ (which involves opening the uterus in order to operate on the fetus) to minimally-invasive endoscopic procedures and pharmacotherapeutic approaches. As these may still come with significant risks both for the pregnant woman and the developing fetus, a second important development is the move beyond ‘heroic’ attempts at saving fetuses against all odds towards evidence-based treatments. There is now a shared understanding that new fetal treatments ought to be introduced in a clinical research setting, ideally using randomized controlled trials (RCTs), based on prior preclinical evidence from animal studies regarding initial safety and efficacy (Deprest et al., 2011). Connected to these developments is an important broadening of the scope of the field. Whereas fetal therapy was initially aimed at giving fetuses with lethal conditions ‘a chance for life’ (Noble & Rodeck, 2008: 227), interventions are now also being developed for non-lethal conditions, in cases where intervening as early as in utero would lead to better long-term health prospects.