Bioethicists disagree with a research team's decision to allow the return of risk results fro some adult-onset conditions from a newborn sequencing project, Reuters reports.
Researchers from the BabySeq project, which aims to study the medical, behavioral, and economic implications of newborn sequencing, initially planned to return only results associated with childhood-onset conditions. But as Reuters notes, the study researchers became concerned when they uncovered a BRCA2 variant in an infant whose family had no history of disease and wanted to be able to inform the family of their risk. After consulting with their institutional review board, the researchers amended their study so that parents also received information about adult-onset disease. This, the BabySeq researchers say, is justified under a "family benefit" of knowing their increased risk.
But in the journal Pediatrics, the University of Chicago's Lainie Friedman Ross and Vanderbilt University Medical Center's Ellen Wright Clayton reject that reasoning. They write that children generally should not be tested for adult-onset disease. This, Reuters notes, then enables children to have an "open future" and allow them as adults to decide what they want to know.
"Until sequencing is ready for prime-time, the focus of pediatric sequencing should be exclusively on identifying diseases or conditions that can impact their present-day medical care," Ross tells Reuters.