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Clinical Pediatrics
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Ensuring the Safe Use of Genomic Medicine in Children

Susanne B. Haga, PhD

Institute for Genome Sciences & Policy, Duke University, Durham, North Carolina, susanne.haga{at}duke.edu

Sharon F. Terry, MA

Genetic Alliance, Washington, DC

Several clinical guidelines recommend that genetic testing in children be limited to tests with immediate clinical benefit. However, use of genome risk profiling will not likely meet this requirement, as the benefits are anticipated to be years away. Children who are at higher risk, though, will benefit the most from early initiation of treatment or interventions. The shift in benefit from immediate to long-term benefit warrants a reevaluation of the current practices of testing in children. In this commentary, the authors advocate the use of genomic risk profiling to identify children at increased risk who would benefit from early intervention, but recognize that its integration in clinical practice for this population will require a more nuanced approach to delivery and follow-up. In particular, the importance of counseling, context, consent, communication, and follow-up in the delivery of genomic risk testing to children and adolescents is highlighted.

Key Words: children • genetic testing • disease risk • prevention

This version was published on September 1, 2009

Clinical Pediatrics, Vol. 48, No. 7, 703-708 (2009)
DOI: 10.1177/0009922809335736


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