Joan S Baizer
Neuroanatomy of autism: what is the role of the cerebellum?
Cerebral cortex (New York, N.Y. : 1991)
advances pediatric oncology next generation sequencing ngs research equitably benefit children diverse representative sample participants needed however little known demographic clinical characteristics differentiate families decline enrollment pediatric oncology ngs research demographic clinical data retrospectively extracted 363 pediatric oncology patients 021 years approached enrollment genomes kids g4k study examining feasibility comprehensive clinical genomic analysis tumors paired normal samples demographic clinical factors significantly differentiated families declined subsequently compared enrollment clinical implementation pharmacogenetics pg4kds 348 families pharmacogenomics study explicit therapeutic benefit examining genes affecting drug responses metabolism fiftythree 146 families declined enrollment g4k raceethnicity variable significantly differentiated study refusal using multivariate logistic regression families black children likely decline enrollment compared families nonhispanic hispanic white children reasons declining g4k generally consistent pediatric genomics research feeling overwhelmed insurance discrimination fears frequently cited families black children also likely decline enrollment pg4kds thirteen 37 348 families approached studies declined pg4kds raceethnicity differentiated study declination across two different pediatric oncology genomics studies suggesting enrollment disparities context pediatric oncology genomics research genomics research participant samples fully represent racial ethnic minorities risk exacerbating health disparities additional work needed understand nuances parental decision making genomic research facilitate enrollment diverse patient populations