Table 3.

Codebook.

Decision making process	Persons involved and resources required to make decisions through testing and follow up period
Child’s involvement	Preferences for children’s involvement in the decision making, ownership, and the return of results
Preferences for sequencing and outcomes	Preferences related to the testing process and required outcomes
Severity of illness	Impact of disease severity on psychological distress, willingness to pay, and willingness to undergo testing
Diagnostic accuracy	Levels of comfort with diagnostic accuracy, validity and the potential for misdiagnosis
Evidentiary uncertainty	Uncertainty related to disease characterization, pathogenicity, and the likelihood of obtaining personal quailty of life and survival improvements following genomic testing
Parental psychological impact	Parental experienced and perceived stess and anxiety associated with having an ill child
Costs	Direct and indirect costs associated with testing. Includes both out-of-pocket and health system costs
Test access considerations	Expectations and concerns about access to testing (e.g., availability and cost)
Return of test results	Processes related to the return of test results, information returned, and the process of communicating results to family
Role for research	Opinions about developing an evidence base to support research
Data sharing	Cross-institutional and cross-jurisdictional data sharing (not specific to research purposes)
Data privacy and security	Concerns and requirements related to data privacy and security