Schoeman Lize, Honey Engela M, Malherbe Helen, Coetzee Vinet
Department of Biochemistry, Genetics and Microbiology, University of Pretoria, Pretoria, South Africa.
Rare Diseases South Africa NPC, Sandton, South Africa.
J Community Genet. 2022 Dec;13(6):641-654. doi: 10.1007/s12687-022-00612-0. Epub 2022 Oct 10.
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.
计算机辅助面部诊断工具是用于先天性疾病早期检测和初步诊断的有价值的新兴技术。这些工具需要大量面部照片数据集，尤其是婴儿和儿童的照片，以识别这些疾病并提高分类准确率。研究人员需要在对更大数据集的需求与患者的隐私权、需求和偏好之间取得平衡。本研究旨在调查家长对于收集、存储、使用和发布其子女面部图像用于研究和诊断目的的看法。共有151名有或没有先天性疾病患儿的家长完成了一项在线调查，评估他们对于收集、存储、使用和发布儿童面部图像用于研究和诊断的看法。总体而言，72.5%的家长允许研究人员拍摄其子女的面部照片，他们更倾向于将图像存储在一个不对公众开放的安全数据库中。与没有这些疾病患儿的家长相比，患有先天性疾病患儿的家长更能接受研究人员拍摄其子女的面部照片。一半的受访者会允许其子女的面部照片在学术期刊上发表，且不遮盖眼睛，随着照片中孩子面部被覆盖比例的增加，这种接受度也会提高。家长们还指出了允许在其他类似研究中使用这些图像的具体要求，在规划涉及面部分析研究的研究时需要考虑这些要求。
