Purpose: It is essential that studies of genomic sequencing in newborns and children (NBSeq) 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 NBSeq research, develop strategies to reduce barriers to enrollment, and facilitate research participation.
Methods: Semi-structured interviews with 49 parents from URG.
Results: Nearly all parents (44 of 49) said they would be interested in participating in an NBSeq study. Parents were interested in participating NBSeq research for reasons including clinical utility, personal utility, and/or family health benefits. Deterrents to enrollment cited by parents were challenges with enrollment procedures (e.g., not wanting a heel stick), limited availability, unfavorable perceptions of the research, and concerns about results they could receive. Most parents (n=35 of 40) said they would want to receive all types of genetic results.
Conclusion: Our findings demonstrate that parents from URG are interested in participating in NBSeq research. Based upon these findings, we provide recommendations for designing NBSeq studies that are responsive to URG concerns.
