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 individualised 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 summarise 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 behavioural trajectories preceding later autism diagnosis raise ethical concerns around three themes: (1) New models for understanding autism; (2) Risks and benefits of early identification and intervention; and (3) 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.
Objectives: We summarise 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 behavioural trajectories preceding later autism diagnosis raise ethical concerns around three themes: (1) New models for understanding autism; (2) Risks and benefits of early identification and intervention; and (3) 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.
| Original language | English |
|---|---|
| Pages (from-to) | 1363-1373 |
| Number of pages | 11 |
| Journal | Journal of Child Psychology and Psychiatry |
| Volume | 62 |
| Issue number | 11 |
| Early online date | 18 Aug 2021 |
| DOIs | |
| Publication status | Published - Nov 2021 |
Bibliographical note
Funding Information:A.M. is supported by a Wellcome Trust doctoral studentship (203329/Z/16/Z) and a Wellcome Trust secondment fellowship (221455/Z/20/Z). E.J.H.J., T.C., and M.H.J. are supported by the UK Medical Research Council (MR/T003057/1) and the Innovative Medicines Initiative 2 (IMI2) Joint Undertaking under grant agreement No 777394 (This Joint Undertaking receives support from the European Union's Horizon 2020 research and innovation program and EFPIA and Autism Speaks, Autistica, SFARI). M.E. is supported by the Canadian Institutes of Health Research, Fonds de Recherche du Québec Santé, and the Azrieli Centre for Autism Research. I.S. is supported by the Wellcome Trust (104825/Z/14/Z; and 203132/Z/16/Z), NIHR Oxford Health Biomedical Research Centre (IS‐BRC‐1215‐20005), and a grant from the Stanley Centre at Broad Institute of Harvard & MIT (HQR01031). Please note that this research was funded in whole, or in part, by the Wellcome Trust [203329/Z/16/Z], [221455/Z/20/Z], [104825/Z/14/Z], and [203132/Z/16/Z]. For the purpose of open access, the author has applied a CC BY public copyright license to any Author Accepted Manuscript version arising from this submission. T.C. has served as a paid consultant to F. Hoffmann‐La Roche Ltd. and Servier; and has received royalties from Sage Publications and Guilford Publications. The remaining authors have declared that they have no competing or potential conflicts of interest.
Publisher Copyright:
© 2021 The Authors. Journal of Child Psychology and Psychiatry published by John Wiley & Sons Ltd on behalf of Association for Child and Adolescent Mental Health.
Keywords
- Autism
- Biomarker
- Genetics
- Neurodevelopmental
- Infant sibling
- Ethics