Pediatric and Fetal Gene Therapies

Many neurological disorders currently lack effective treatments, thereby setting the stage where gene therapies can represent an attractive option. Given the early onset of many genetic conditions, including neurodevelopmental disorders, proponents of gene therapy advocate for earlier therapeutic interventions, meaning pediatric or even fetal gene therapy. From an ethical point of view, therapies targeting children and fetuses differ in crucial ways from therapies where the patients are adults. Neurodevelopmental disorders are sometimes argued to affect the ethical implications of therapeutics differently from other non-neurodevelopmental genetic conditions, in that neurodevelopmental disorders are often seen to affect human identity in particularly salient ways. This chapter focuses on the ethical implications set up specifically by gene therapies occurring early in life (either post- or pre-natally) and targeting neurodevelopmental disorders. We argue that the way the extant bioethical literature overwhelmingly (but not exclusively) presents the arguments results from individualistic theoretical positions, even though several calls for ethically assessing these health technologies from a relational position have been made for more than a decade now. We are not looking here to dismiss important ethical questions as irrelevant, but rather to draw attention to the (often humanist) assumptions implicit in their formulations, in order to re-formulate them, thereby avoiding unnecessary paradoxes introduced by the framing of the ethical analyses, and not inherent to the technologies in question. This re-formulation results in considering the relevant ethical principles (such as justice, beneficence, autonomy) in the context of each other, as opposed to in isolation (and additively).