Commentary
The Ethics of Predicting Autism Spectrum Disorder in Infancy

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Limits and Recommendations for Predictive Genetic Testing in Childhood

The prediction of disorder or disease before the onset of symptoms has long been a goal of preventive medicine. In practice, however, it can be challenging to convey a predictive diagnosis in the absence of observable symptoms, and to manage the individual-level uncertainty about when (and to what degree) symptoms will eventually manifest. If a predictive test can allow an efficacious treatment to be started immediately, there is clear objective benefit to testing. However, when there is no

Benefits and Risks of Predictive Testing for ASD

If decisions to pursue predictive testing for ASD are left to parents, what are the potential benefits and risks that a parent (and their health care provider) would want to consider? The most immediate benefit may be relief from anxiety caused by uncertainty. Most parents of children with ASD are aware that the disorder is heritable and are concerned about the recurrence risk to current and future children.6 Siblings of children with ASD have a 12-fold higher risk of developing the disorder,

Setting the Stage for Future Research

Adoption of a new predictive test (in any modality) requires cumulative evidence that the benefits of testing outweigh the harms. Carefully designed, prospective research studies are the best way to gather such evidence. Therefore, although clinical application of predictive testing for infants at high risk for ASD is currently premature, research efforts to develop and evaluate such tests are ethically warranted. Carefully developed informed consent procedures for such studies will be critical

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This work was supported by F32MH118689 from the National Institute of Mental Health (NIMH) and the National Institutes of Health (NIH) Brain Research through Advancing Innovative Neurotechnologies® (BRAIN) Initiative (to K.E.M).

This work was previously presented at the American Society for Bioethics and Humanities 22nd Annual Conference; October 12−18, 2020 (virtual).

Author ContributionsConceptualization: MacDuffie, WilfondWriting – original draft: MacDuffieWriting – review and editing: MacDuffie, Estes, Peay, Pruett, Jr, Wilfond

Disclosure: Dr. MacDuffie has received support from NIMH. Dr. Estes has received support from NIMH, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), and the National Institute of Environmental Health Sciences. Dr. Peay has received support from the National Institute of Allergy and Infectious Diseases, NCATS, NIMH, and the Food and Drug Administration. Dr. Pruett, Jr has received support from NIMH, NICHD, the Center for Brain Research in Mood Disorders (C-BRiMD), the Simons Foundation: “Toward scalable biomarker-based prediction of ASD in high-risk infants” (completed), and the Drs. John R. (Sr.) and Patricia O. Pruett Fund for research in social cognition and for undergraduate training. Dr. Wilfond has received support from the National Cancer Institute, the National Center for Advancing Translational Sciences (NCATS), the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute on Aging, the National Human Genome Research Institute, and the National Center for Complementary and Integrative Health. Dr. Peay has received support from NIAID, NCATS, NIMH, and the Food and Drug Administration.

All statements expressed in this column are those of the authors and do not reflect the opinions of the Journal of the American Academy of Child and Adolescent Psychiatry. See the Guide for Authors for information about the preparation and submission of Commentaries.

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