TABLE 2.
Cross-Consortium Working Groups
| Ethical, Legal, Economic, and Social Issues | Common Data Elements | Outcomes and Measure |
|---|---|---|
| Key questions | Key questions | Key questions |
| • Differences in perceptions of benefits and risks of sequencing between symptomatic and asymptomatic populations | • Identify common data elements in the NSIGHT projects to be collected systematically across the consortium | • Identify common outcome measures in the NSIGHT projects to be collected systematically across the consortium |
| • Parent willingness to accept sequencing and factors associated with parents’ decisions | • Collaboration with NBSTRN to use LPDR for individual cohort and combined cohort analysis where applicable | • Considerations of the overall cost/benefit ratio of newborn sequencing |
| • Extent to which parents are willing to accept uncertainties inherent in test interpretation | • Define data elements to be shared more broadly, in a deidentified fashion, with other researchers in the NBSTRN | |
| • How key stakeholders make decisions about whom to test, how to share results, under what circumstances, and with what goals | ||
| • Public policy regarding use of genome sequencing as part of mandated screening programs |
LPDR, Longitudinal Pediatric Data Resource (https://www.nbstrn.org/research-tools/longitudinal-pediatric-data-resource).