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Diverse Participant Recruitment for Infant Sequencing in the BabySeq Project

Maya C Del Rosario, Sheyenne A Walmsley, Barbara W Harrison

    Medrxiv : the Preprint Server for Health Sciences
    |October 17, 2024
    PubMed

    Insights

    Parents from under-represented racial and ethnic groups (URG) are interested in infant genomic sequencing (GS) research. Addressing enrollment barriers and concerns is key to facilitating participation in pediatric GS studies.

    Area of Science:

    • Genomics
    • Pediatric Research
    • Health Equity

    Background:

    • Genomic sequencing (GS) in children requires diverse participation for equitable application.
    • Under-represented racial and ethnic groups (URG) are crucial for inclusive genomic studies.

    Purpose of the Study:

    • To understand URG parents' perspectives on infant GS research.
    • To identify barriers and facilitators for URG participation in GS studies.
    • To inform strategies for equitable enrollment in pediatric genomic research.

    Main Methods:

    • Conducted semi-structured interviews with 50 parents from URG.
    • Explored parental attitudes, motivations, and concerns regarding infant GS.

    Main Results:

    • High parental interest (44/50) in infant GS research, driven by clinical, personal, and family health benefits.
    • Identified enrollment deterrents: procedural discomfort (e.g., heel stick), limited emotional bandwidth, negative perceptions, and result concerns.
    • Most parents (35/40) desired all genetic result types (actionable, non-actionable, childhood- and adult-onset).

    Conclusions:

    • Parents from URG show significant interest in participating in infant GS research.
    • Recommendations are provided for designing GS studies that address URG parental concerns.
    • Informed study design can enhance URG recruitment and promote health equity in genomics.
    Abstract

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