This month’s PediatricsEthics Rounds imagines the near future in which a validated, presymptomatic screening test for autism spectrum disorder (ASD) is available and discusses the ethical issues involved in a hypothetical, randomized clinical trial of a behavioral intervention (10.1542/peds.2020-032250). The ethical issues involve several layers. One layer is the potential benefits, risks, and alternatives of the behavioral intervention and study procedures. A second layer highlights the potential risks to those with false positive and negative test results. In this case, presymptomatic intervention might be more beneficial and individuals may also benefit from other aspects of trial participation. A behavioral intervention may, however, have psychological and financial risks. A third layer is equitable access to the trial and the intervention if it proves beneficial.
A layer that readers may not have previously considered is what should be the goal of intervention? Drs. John Pruett and Joseph Priven, psychiatrists and neuroscientists, state “Our goal is to mitigate the development of significantly impairing ASD phenotypes and not to limit the wonderful diversity of human expression, subjective experience, and achievement inherent in those individuals who find these characteristics syntonic with their view of themselves.” While calling for ethical, legal, and social implication research in this area, they do not describe how the distinction between impairment and personality traits can be made in young children whose personality is developing and who cannot meaningfully participate in decision making. Dr. Lucas Harrington, a clinical psychologist and autistic self-advocate, criticizes efforts to “cure” autism and behavioral interventions whose goal is to mold autistic behavior towards neurotypical norms. He argues instead for supports and accommodations that will help autistic children thrive. He responds to criticisms that the neurodiversity movement overlooks autistic people with intellectual disability and destructive behavior. (Autistic self-advocate and autistic people are terms Dr. Harrington uses in his commentary. An autistic self-advocate is an autistic person who advocates for him/her/themself and potentially other autistic people. For information on the debate about the use of the terms autistic people and people with autism, click here.
Presymptomatic screening tests for ASD are likely to develop in the coming years. This month’s Ethics Rounds raises the important issue of subsequent interventions and may introduce readers to the neurodiversity movement which is underrepresented in the medical literature. What do you think?
