Ethical Framework Developed for Genomic Testing Results in Pediatrics
(HealthDay News) — An ethical framework has been developed to guide the professionally responsible disclosure of results of genomic sequencing in pediatric practice. The guidance is presented in a special article published online September 14 in Pediatrics.
Noting that the results of genomic sequencing are distinctive because of their complexity and subsequent challenges of interpretation, Laurence B. McCullough, PhD, from Baylor College of Medicine in Houston, and colleagues discussed the need to prepare for the professionally responsible disclosure of results to parents and patients, including management of uncertain data.
The researchers described an ethical framework to guide and assess the professionally responsible disclosure of genomic sequencing results in pediatric practice. Three core concepts were included: the standard for the best interests of the child, parental surrogate decision-making, and pediatric assent. Pediatricians should explain the nature of the proposed test, its scope and complexity, the categories of results, and the concept of secondary or incidental findings when recommending sequencing.
"Pediatricians should obtain the informed permission of parents and the assent of mature adolescents about the scope of sequencing to be performed and the return of results," the authors write.