Designing Inclusive Newborn Sequencing Research: Insights From Parents in Underrepresented Communities

Authors

• Maya C Del Rosario
• Sheyenne A Walmsley
• Barbara W Harrison
• Crystal T Stephens
• Bethany Zettler
• Greysha Rivera-Cruz
• Priyal Agrawal
• Amy Brower
• Stephanie Chigbu
• Kurt D Christensen
• Casie A Genetti
• Richetta Givens
• Nina B Gold
• Inez V Reeves
• Isabella Schichter
• Habib Shariat
• Sandra Simon
• Hadley Stevens Smith
• Melissa Uveges
• Robert C Green
• Ingrid A Holm
• Stacey Pereira

Language

English

Publication Date

1-28-2026

Journal

BMC Medical Genomics

DOI

10.1186/s12920-026-02307-8

PMID

41593648

PMCID

PMC12924578

PubMedCentral® Posted Date

1-28-2026

PubMedCentral® Full Text Version

Post-print

Abstract

Background: It is essential that studies of genomic sequencing (GS) in newborns and children include individuals from under-represented racial and ethnic groups (URG) to ensure future applications are equitably implemented. We conducted interviews with parents from URG to better understand their perspectives on GS research, develop strategies to reduce barriers to enrollment, and facilitate research participation.

Methods: Semi-structured interviews with 50 parents from URG.

Results: Nearly all parents said they would be interested in participating in an infant GS study. Parents were interested in participating in GS research for reasons including clinical utility, personal utility, and/or family health benefits. Deterrents to enrollment cited by parents were discomfort with enrollment procedures (e.g., not wanting a heel stick), limited emotional bandwidth, unfavorable perceptions of the study, and concerns about potential results. Most parents said they would want to receive all types of genetic results, including actionable and non-actionable, as well as childhood- and adult-onset.

Conclusion: Our findings demonstrate that parents from URG are interested in participating in GS research. Based upon these findings, we provide recommendations for designing GS studies that are responsive to their concerns.

Keywords

Adult, Female, Humans, Infant, Newborn, Male, Parents, Whole Genome Sequencing, Patient Participation, Biomedical Research, Genome sequencing, Underrepresented populations, Diversity, Ethics, Newborn sequencing

Published Open-Access

yes

Recommended Citation

Del Rosario, Maya C; Walmsley, Sheyenne A; Harrison, Barbara W; et al., "Designing Inclusive Newborn Sequencing Research: Insights From Parents in Underrepresented Communities" (2026). Center for Medical Ethics and Health Policy Staff Publications. 367.
https://digitalcommons.library.tmc.edu/med_ethics/367