When Participants in Genomic Research Grow Up: Contact and Consent at the Age of Majority

The Journal of Pediatrics – The landscape of pediatric research is becoming more complex. Contemporary research studies, and genome studies in particular, frequently involve a range of research activities. For example, the Clinical Sequencing Exploratory Research (CSER) Consortium studies evaluate whether genomic testing can be useful in clinical settings. These studies include the storage of biosamples for future research, observations about the way providers interact with results reported in electronic health records, and the contribution of data to national databases like ClinVar and the Database of Genotypes and Phenotypes (dbGaP).