When participants in genomic research grow up: Contact and consent at the age of majority.
Brothers, K. B., Holm, I. A., Childerhose, J. E., Antommaria, A. H. M., Bernhardt, B. A., & al., e. (2016). When participants in genomic research grow up: Contact and consent at the age of majority. The Journal of Pediatrics, 168, pp. 226-231.
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 Consortium studies evaluate whether genomic testing can be useful in clinical settings.1 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).2,3
Given this complexity, pediatric investigators and Institutional Review Boards (IRBs) working on research projects of this type may find it challenging to develop an appropriate plan for addressing consent when pediatric research participants reach adulthood. After all, the research activities that comprise a complex study frequently differ with respect to timing, the risk involved, and the opportunities for interaction between investigators and participants. Any plan to readdress consent when a participant reaches the age of majority must account for all of these considerations.
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