Ethical dimensions of translational developmental neuroscience research in autism

Abstract

Background: Since the 1990s, increasing research has been devoted to the identification of biomarkers for autism to help attain more objective diagnosis; enable early prediction of prognosis; and guide individualized intervention options. Early studies focused on the identification of genetic variants associated with autism, but more recently, research has expanded to investigate neurodevelopmental markers. While ethicists have extensively discussed issues around advances in autism genomics, much less ethical scrutiny has focused on research on early neurodevelopment and on the interventions being developed as a result. Objectives: We summarize the current state of the science on the identification of early markers for autism and its potential clinical applications, before providing an overview of the ethical issues arising from increasing understanding of children's neurodevelopment in very early life. Results: Advances in the understanding of brain and behavioral trajectories preceding later autism diagnosis raise ethical concerns around three themes: (a) New models for understanding autism; (b) Risks and benefits of early identification and intervention; and (c) Communication of early concerns to families. These ethical issues should be further investigated in research conducted in partnership with autistic people and their families. Conclusions: This paper highlights the need for ethical scrutiny of early neurodevelopmental research in autism. Scrutiny requires expertise and methods from the basic sciences and bioethics, as well as constructive collaborations among autistic people, their parents, and autism researchers to anticipate early interventions that serve the community's interests and accommodate the varied experiences and preferences of people on the spectrum and their families.

Autistic Perspectives on the Future of Clinical Autism Research

“…Although many ethical issues and questions remain unaddressed, 98 it is encouraging to see an attempt at considering such ethical issues in clinical autism research and a call for “constructive collaborations” with autistic people and the wider autism community. 99 However, although this is a welcome development, at times such collaborations have appeared merely performative.…”

Long-term morphological and functional dynamics of human stem cell-derived neuronal networks on high-density micro-electrode arrays

“…Neurodevelopmental research in humans is mostly limited to postmortem and neuroimaging techniques, hindering detailed developmental studies using electrophysiology tools ( Manzini et al, 2021 ; Mezinska et al, 2021 ). The human brain develops through proliferation and differentiation of neuronal progenitor cells, migration of immature neurons, axonal elongation and pathfinding, dendrite growth and arborization and synaptogenesis ( Raybaud et al, 2013 ; Budday et al, 2015 ; Jiang and Nardelli, 2016 ; Silbereis et al, 2016 ).…”

Perspectives on heterogeneity-informed cognitive training for attention-deficit/hyperactivity disorder

“…The genetic pattern implies the possibility of conducting preemptive CT for individuals genetically predisposed to AD/HD to prevent the detrimental cascades. However, preemptive interventions in AD/HD will also be subject to the ethical issues related to preemptive interventions in other neurodevelopmental disorders, for example, neglecting the effect of “nurture” and miscommunicating early concerns to families [for further discussion, please see Manzini et al ( 54 )].…”