A Communication and Decision-Making Framework for Pediatric Precision Medicine

Abstract

Advances in genomic testing have been pivotal in moving childhood cancer care forward, with genomic testing now a standard diagnostic tool for many children, adolescents, and young adults with cancer. Beyond oncology, the role of genomic testing in pediatric research and clinical care is growing, including for children with developmental differences, cardiac abnormalities, and epilepsy. Despite more standard use in their patients, pediatricians have limited guidance on how to communicate this complex information or how to engage parents in decisions related to precision medicine. Drawing from empirical work in pediatric informed consent and existing models of shared decision-making, we use pediatric precision cancer medicine as a case study to propose a conceptual framework to approach communication and decision-making about genomic testing in pediatrics. The framework relies on identifying the type of genomic testing, its intended role, and its anticipated implications to inform the scope of information delivered and the parents' role in decision-making (leading to shared decision-making along a continuum from clinician-guided to parent-guided). This type of framework rests on practices known to be standard in other complex decision-making but also integrates unique features of genomic testing and precision medicine. With the increasing prominence of genomics and precision medicine in pediatrics, with our communication and decision-making framework, we aim to guide clinicians to better support their pediatric patients and their parents in making informed, goal-concordant decisions throughout their care trajectory.

FIGURE 1

Four-step framework for SDM in pediatrics. This algorithm can be used for any discrete clinical decision. The first 3 steps each pose a question to the physician, and Steps 3 and 4 direct the type and version of SDM to use for the particular clinical decision. Adapted from “A 4-Step Framework for Shared Decision-making in Pediatrics” by D. Opel.

FIGURE 2

Framework for SDM in pediatric precision medicine. The type of genomic testing should inform the scope of the parent’s role in decision-making. As explained in greater detail in the text, testing that immediately impacts the child’s treatment and has a limited possibility of secondary or incidental findings is most amenable to clinician-guided SDM, whereas those without any impact on the child’s treatment but with a high likelihood of secondary or incidental findings are a better fit for parent-guided SDM (with many decisions lying somewhere between those 2 extremes).

FIGURE 3

Conceptual model of the SDM process in pediatric precision medicine. Decisions regarding genomic testing take place in a communication climate informed by the characteristics and perspectives of the clinician and parent engaged in the SDM process.