Journal of perinatology : official journal of the California Perinatal Association · 2026
Understanding perspectives of safety-net NICU neonatologists disclosing genomic sequencing results: a mixed methods approach.
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Hills Sonia, Werner Meghan, Douglas Jessica, D'Gama Alissa M, Wojcik Monica H, Young Vanessa, VIGOR Network, Yu Timothy W, Agrawal Pankaj B, Parker Margaret G
Аннотация
OBJECTIVE: Examine neonatologists' perspectives on disclosing rapid genomic sequencing (rGS) results, including the barriers and facilitators they perceive.
STUDY DESIGN: Neonatologists from 10 NICUs participating in the Virtual Genome Center (VIGOR) study were surveyed after each rGS disclosure and interviewed regarding their experience after 2 or more disclosures. Quantitative results were compared by result type, and qualitative results were iteratively coded for themes.
RESULTS: 93% of neonatologists felt comfortable disclosing rGS results regardless of result type. Neonatologists utilized multiple resources to prepare for disclosures, including the VIGOR Clinical Interpretive Report, medical literature, and local genetics experts. They preferred to have a geneticist present during disclosure when possible. Neonatologists were motivated to participate in disclosures to help families and leverage existing trust.
CONCLUSION: Neonatologists are important to the rGS disclosure experience, but a joint effort with genetics experts may be the ideal model to successfully expand access.
TRIAL REGISTRATION NUMBER: NCT05205356/clinicaltrials.gov .
STUDY DESIGN: Neonatologists from 10 NICUs participating in the Virtual Genome Center (VIGOR) study were surveyed after each rGS disclosure and interviewed regarding their experience after 2 or more disclosures. Quantitative results were compared by result type, and qualitative results were iteratively coded for themes.
RESULTS: 93% of neonatologists felt comfortable disclosing rGS results regardless of result type. Neonatologists utilized multiple resources to prepare for disclosures, including the VIGOR Clinical Interpretive Report, medical literature, and local genetics experts. They preferred to have a geneticist present during disclosure when possible. Neonatologists were motivated to participate in disclosures to help families and leverage existing trust.
CONCLUSION: Neonatologists are important to the rGS disclosure experience, but a joint effort with genetics experts may be the ideal model to successfully expand access.
TRIAL REGISTRATION NUMBER: NCT05205356/clinicaltrials.gov .