Peer-reviewed article
Changing the Child: The Impact of Novel Treatments on the Identity of Children With Monogenic Neurodevelopmental Disorders.
van Till SAL, Schermer MHN, Bruining H, Verhage M, Bunnik EM ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This paper analyzes parents' concerns about how novel treatments for rare genetic neurodevelopmental disorders might affect their children's identity and sense of self. Through interviews with parents of children with STXBP1-Related Disorders and Kleefstra Syndrome, the authors identify four categories of identity-related concerns: whether treatments enable children's development, whether they alienate children from their true self, whether they disrupt family relationships, and whether they conflict with children's horizontal identities. While parents generally support treatment development, some worry that treatments could change who their child fundamentally is or perpetuate stigma. The paper recommends that clinicians discuss these identity concerns with parents when considering clinical trial participation.
Key points
- Parents of children with monogenic neurodevelopmental disorders have predominantly positive attitudes towards novel treatments but some express concerns about identity impacts
- Four sets of identity-related concerns identified: enabling self-development, alienation from true self, disruption of relational identities, and conflict with horizontal identities
- Some parents worry treatments could alter meaningful personal characteristics and disrupt family dynamics
- Parents fear treatments may perpetuate stigma by suggesting children need to be 'fixed'
- Clinicians should discuss identity-related concerns with parents when deciding on clinical trial participation
Limitations
This is a qualitative analysis of parent perspectives only, not an evaluation of actual treatment outcomes or impacts on children's identity. The paper does not provide data on whether these identity concerns actually materialize when treatments are administered, nor does it assess children's own experiences or perspectives.
Abstract
Scientific advancements offer new possibilities for developing novel treatments for children with monogenic neurodevelopmental disorders (mNDDs), targeting the underlying effects of their condition. Although, in qualitative studies, parents of children with mNDDs have predominantly positive attitudes towards the development of novel treatments, a few parents express concerns about whether treatments could change who their child is. Existing literature on personal identity, including literature on how personal identity is affected by medical (neuro-)interventions, can assist in clarifying these concerns. This paper provides an analysis of interview data on perspectives of parents with children with mNDDs (STXBP1-Related Disorders and Kleefstra Syndrome) on the impact of novel treatments on their child's identity. We identify four sets of concerns, about whether treatments (1) enable children to develop their self, (2) alienate children from their true self, (3) disrupt children's relational identities, and (4) defy children's horizontal identities. While parents hope that treatments will help children flourish, some worry that treatments may alienate children from their self or alter children's personal characteristics which are meaningful to caregivers, thereby disrupting family dynamics. Others fear treatments may produce stigma by perpetuating the narrative that children need to be "fixed". This analysis helps to understand the ambivalence some parents express when considering their child's participation in clinical trials. For clinicians and researchers, it is essential to discuss parents' concerns about impacts of treatments on their child's identity (if present) when deciding on the child's participation in clinical trials, and to monitor children for identity-related effects of novel treatments.