To Test or Not to Test: Parents' Perspectives on Infant Sibling Studies in Autism Spectrum Disorders
Longitudinal studies of younger siblings of children on the autism spectrum are important as they may point to potentially malleable behavioral and brain processes associated with the later emergence of symptoms. Yet, ethical discussions around such sibling studies are not well-developed. In particular, a better understanding of the potential risks and disadvantages for participating families is needed in order to accurately evaluate the benefit-risk ratio.
We investigated parents’ perspectives on participating in an infant siblings study in order to assess possible risks, disadvantages and concerns for participating families. This study builds on previous findings using a larger sample.
Questionnaire data was obtained from a total of 79 parents (65% participation) after completion of at least three visits. The data collection was part of an ongoing longitudinal study following infant siblings from 5 months of age to 72 months. Infant siblings had either an older sibling on the autism spectrum or an older neurotypical sibling. During the visits families underwent multiple measures and assessments including eye-tracking, motion-tracking, parent-child-interaction, EEG and MRI. Families typically spent 4-5 h in the lab. The questionnaire examined parents’ attitudes towards participating in an infant sibling study, assessed parents’ satisfaction and motivation, and explored how parents perceived the child’s satisfaction with the study.
The responses from parents indicated a high level of satisfaction with study participation, both from their own (87%), and the envisaged child perspective (72%). In open comments, parents emphasized the importance and meaningfulness of studying early trajectories in atypical development and a majority strongly recommended other families to participate (89%). No parent expressed complaints about experimental measures or growing concerns for the child’s development due to study participation, rather parents expressed appreciation of getting early feedback and advice concerning their child’s development. However, the many questionnaires used in the study and long testing days were perceived as a burden for the parents.
Studying infant siblings of children on the autism spectrum provides important scientific knowledge about the early development of neurodevelopmental disorders. Assessing early precursors and illuminating differential pathways on the autism spectrum is likely to facilitate early diagnosis and intervention. Although our data are based on participating parents only, they suggest that infant sibling studies have a favorable benefit-risk ratio, which is informative for future ethical discussions.