Parents' perceptions of the usefulness of chromosomal microarray analysis for children with autism spectrum disorders.
Tell autism families up-front what the DNA test can’t yet explain to avoid later shock and false hope.
01Research in Context
What this study did
Reiff et al. (2015) listened to a two-day ethics meeting. Thirty parents, doctors, and scientists talked about telling families the results of chromosomal microarray testing for autism.
The authors wrote down the worries people raised. They grouped the worries into four big themes: unclear answers, hard words, fairness, and who does what.
What they found
Parents often leave the room with half-answers. A test may show a DNA change, but no one knows what it means.
Doctors fear the news will upset parents or leak to insurance companies. Parents fear blame and false hope.
The meeting ended with a simple rule: always say what is unknown right away.
How this fits with other research
Reiff et al. (2017) later asked 35 parents the same question in real life. The later study shows parents do accept permanence after a genetic answer, but they also feel new hope for future drugs. The 2015 warning still matters: hope must be paired with clear uncertainty.
Lemons et al. (2015) surveyed parents across many genetic conditions. Families who hated the first talk still dread telling their child years later. The survey numbers back up the 2015 plea for a gentle first conversation.
Lee et al. (2022) counted test rates in Jordan. Only one in four autistic children ever got the microarray the 2015 paper worries about. The ethical talk is empty if the test never happens.
Why it matters
You may be the only person who explains microarray results. Start with "Some findings change treatment, some don’t, and some we just don’t know yet." Write the unknowns on paper for the family to take home. Check if they actually got the test; Lee et al. (2022) shows many never do. A five-minute honesty script can spare years of confusion and worry.
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02At a glance
03Original abstract
Autism spectrum disorders are an issue of increasing public health significance. The incidence of autism spectrum disorders has been increasing in recent years, and they are associated with significant personal and financial impacts for affected persons and their families. In recent years, a large number of scientific studies have been undertaken, which investigate genetic and environmental risk factors for autism, with more studies underway. At present, much remains unknown regarding autism spectrum disorder risk factors, but the emerging picture of causation is in many cases complex, with multiple genes and gene-environment interactions being at play. The complexity and uncertainty surrounding autism spectrum disorder risk factors raise a number of questions regarding the ethical considerations that should be taken into account when undertaking autism spectrum disorder risk communication. At present, however, little has been written regarding autism spectrum disorder risk communication and ethics. This article summarizes the findings of a recent conference investigating ethical considerations and policy recommendations in autism spectrum disorder risk communication, which to the authors' knowledge is the first of its kind. Here, the authors discuss a number of issues, including uncertainty; comprehension; inadvertent harm; justice; and the appropriate roles of clinicians, scientists, and the media in autism spectrum disorder risk communication.
Journal of autism and developmental disorders, 2015 · doi:10.1177/1362361312453511