Журнал клинических исследований и биоэтики

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Whole Genome Sequencing of Children's DNA for Research: Points to Consider

Kristien Hens

Techniques to sequence the entire exome or even genome of an individual are evolving rapidly. Experts believe that in the future it will be possible to sequence the whole genome of an individual for a thousand dollars or less [1]. The advent of cost-effective sequencing techniques opens many possibilities for genetic diagnostics and screening. Furthermore, genetic research will also benefit greatly [2]. For example, research on the genetic component of Autism Spectrum Disorder could take a huge leap forward, as the genes contributing to this disorder are believed to be located throughout the genome [3]. Genetic research on extracted DNA from children has proven to be necessary and fruitful. Such research can focus on specific childhood diseases but can also take the form of longitudinal cohort studies, where children are followed for several years to match genotypical and phenotypical data. The ethical issues raised by the participation of children in genetic research are not analogous to those raised by adult participation, nor do they correspond completely to those raised by the participation of children in clinical trials. These issues include questions about risks and benefits, the scope of parental consent and the return of individual research results.