4.5 Article

Ethical dimensions of translational developmental neuroscience research in autism

期刊

JOURNAL OF CHILD PSYCHOLOGY AND PSYCHIATRY
卷 62, 期 11, 页码 1363-1373

出版社

WILEY
DOI: 10.1111/jcpp.13494

关键词

Autism; biomarkers; genetics; neurodevelopment; infant siblings; ethics

资金

  1. Wellcome Trust [203329/Z/16/Z, 221455/Z/20/Z, 104825/Z/14/Z, 203132/Z/16/Z]
  2. UK Medical Research Council [MR/T003057/1]
  3. Innovative Medicines Initiative 2 (IMI2) Joint Undertaking [777394]
  4. European Union
  5. EFPIA
  6. Autistica
  7. Canadian Institutes of Health Research
  8. Fonds de Recherche du Quebec Sante
  9. Azrieli Centre for Autism Research
  10. NIHR Oxford Health Biomedical Research Centre [IS-BRC-1215-20005]
  11. Autism Speaks
  12. SFARI
  13. Stanley Centre at Broad Institute of Harvard MIT [HQR01031]
  14. MRC [MR/T003057/1] Funding Source: UKRI
  15. Wellcome Trust [203329/Z/16/Z, 221455/Z/20/Z] Funding Source: Wellcome Trust

向作者/读者索取更多资源

This paper outlines the current research on early markers for autism and highlights the ethical concerns surrounding the understanding of children's neurodevelopment. It emphasizes the importance of collaboration between researchers, autistic individuals, and their families to address early interventions that accommodate diverse experiences and preferences.
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.

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