Designing inclusive newborn sequencing research: insights from parents in underrepresented communities

Area of Science:

• Genomics
• Pediatric Research
• Health Equity

Background:

• Genomic sequencing (GS) in newborns and children requires diverse participation from under-represented racial and ethnic groups (URG) for equitable application.
• Understanding URG perspectives on GS research is crucial for developing effective recruitment strategies.
• Parental engagement in pediatric genomic studies is vital for advancing precision medicine.

Purpose of the Study:

• To explore the perspectives of parents from URG regarding genomic sequencing research in children.
• To identify barriers and facilitators to URG participation in infant genomic sequencing studies.
• To inform the design of inclusive and responsive genomic research protocols.

Main Methods:

• Conducted semi-structured interviews with 50 parents from under-represented racial and ethnic groups.
• Gathered insights on parental interest, motivations, and concerns related to infant genomic sequencing research.
• Analyzed qualitative data to understand participant viewpoints and identify enrollment challenges.

Main Results:

• High parental interest in participating in infant genomic sequencing research was reported.
• Key motivations for participation included clinical utility, personal utility, and family health benefits.
• Identified enrollment deterrents such as procedural discomfort, limited emotional capacity, study perceptions, and concerns about genetic results.

Conclusions:

• Parents from URG express significant interest in contributing to genomic sequencing research.
• Recommendations are provided for designing genomic studies that address parental concerns and promote equitable participation.
• Future genomic research should prioritize inclusivity and responsiveness to diverse community needs.