Computer-aided facial diagnostic tools are valuable emerging technologies for the early detection and initial diagnosis of congenital disorders. These tools require large datasets of facial photographs, especially of infants and children, to identify these disorders and improve classification accuracies. Researchers need to balance this need for larger datasets with patients’ privacy rights, needs and preferences. This study aimed to investigate parents’ views regarding the collection, storage, use and publication of their children’s facial images for research and diagnostic purposes. A total of 151 parents of children with and without congenital disorders completed an online survey evaluating their views on the collection, storage, use and publication of children’s facial images for research and diagnosis. Overall, 72.5% of parents would allow researchers to take facial photographs of their children, preferring the images to be stored in a secure database that is not available to the public. Parents of children with congenital disorders were more accepting of researchers taking facial photographs of their children, compared to parents of children without these conditions. Half of the respondents would allow facial photographs of their children to be published in academic journals, without their eyes covered, and this acceptance increased as the proportion of the child’s face covered increased. Parents also indicated specific requirements to allow the use of these images in other similar research studies which need to be taken into consideration when planning studies that involve facial analysis research.
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The datasets generated and/or analysed during the current study are available from the corresponding author on reasonable request.
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Lize Schoeman was supported by the University of Pretoria Postgraduate Masters Research Bursary.
The authors declare no competing interests.
This study received ethical approval from the Research Ethics Committees of the Faculty of Natural and Agricultural Sciences and the Faculty of Health Sciences at the University of Pretoria (NAS117/2021). All procedures followed were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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All participants gave informed consent before participating by selecting ‘Yes’ to an informed consent question at the beginning of the survey.
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Schoeman, L., Honey, E.M., Malherbe, H. et al. Parents’ perspectives on the use of children’s facial images for research and diagnosis: a survey. J Community Genet 13, 641–654 (2022). https://doi.org/10.1007/s12687-022-00612-0