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Testing Sensory and Multisensory Function in Children with Autism Spectrum Disorder
Published on: April 22, 2015
Presymptomatic Detection and Intervention for Autism Spectrum Disorder
Katherine E MacDuffie1,2, Annette M Estes3, Lucas T Harrington3
1Departments of Speech and Hearing Sciences and kmacd@uw.edu.
Insights
Early detection of autism spectrum disorder (ASD) in infants is crucial. This study designs a hypothetical trial for presymptomatic ASD detection and intervention, addressing ethical considerations.
Area of Science:
- Neurodevelopmental disorders
- Pediatric medicine
- Bioethics
Background:
- Universal screening for autism spectrum disorder (ASD) is recommended by age two, but many children are diagnosed later.
- Objective measures for early ASD risk detection in infancy are under development.
- MRI-based screening shows promise for high-risk infants but requires clinical trials.
Purpose of the Study:
- To present a hypothetical clinical trial design for presymptomatic ASD detection and intervention.
- To explore ethical issues associated with early ASD detection and intervention through diverse expert commentaries.
- To consider the social value, clinical potential, challenges, and risks/benefits of such research.
Main Methods:
- The study outlines a hypothetical clinical trial design.
- It incorporates commentaries from experts in bioethics, clinical practice, and neurodiversity.
- Ethical considerations, risks, and benefits are evaluated from multiple perspectives.
Main Results:
- The abstract does not present results, as it focuses on study design and ethical considerations.
- Commentaries highlight the social value and clinical potential of presymptomatic ASD research.
- Ethical challenges, neurodiversity implications, and risk-benefit analyses are discussed.
Conclusions:
- Further research and clinical trials are needed for presymptomatic ASD detection and intervention.
- Anticipating and addressing ethical issues is paramount for responsible research.
- Balancing potential benefits with risks is essential for future phases of ASD research.
Abstract:
Universal screening for autism spectrum disorder (ASD) is recommended during pediatric primary care visits in the first 2 years of life. However, many children are missed by initial screening and not diagnosed with ASD until years later. Research efforts are underway to develop and evaluate new objective measures of risk for ASD that can be used in infancy, before symptoms emerge. Initial studies with these tests, particularly MRI-based screening for infants at high familial risk, have shown promise but have not yet been evaluated in clinical trials. We present the study design for a hypothetical clinical trial that would combine presymptomatic detection and intervention for ASD and consider, through commentaries from diverse perspectives, the ethical issues that should be anticipated in advance of beginning such trials. Commentators Drs Pruett and Piven address the social value of the proposed research and importance of researcher-bioethicist collaborations. Drs Estes and Wolff discuss the clinical potential and challenges of developing presymptomatic interventions for infants at risk for ASD. Dr Harrington takes a neurodiversity view of presymptomatic prediction and intervention and their implications for autistic identity and quality of life. Finally, Drs MacDuffie, Peay and Wilfond consider the potential risks and benefits that must be evaluated and weighed in the next phases of research on presymptomatic detection and intervention for ASD.
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