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Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric
Sabrina N Powell1,2, Grace Byfield1,2, Ashley Bennetone3
1Program for Precision Medicine in Health Care, University of North Carolina at Chapel Hill, Chapel Hill, NC, United States.
Insights
Parents are key partners in exploring the integration of genomic sequencing into newborn screening (NBS). A Community Research Board (CRB) was formed to gather parental insights and develop strategies for equitable implementation of genetic screening.
Area of Science:
- Genomic medicine and public health implementation science.
- Bioethics and stakeholder engagement in genetic screening.
Background:
- Genomic sequencing offers expanded clinical utility for newborn screening (NBS).
- Significant ethical, legal, social implications (ELSI) and technical challenges hinder NBS expansion.
- Parental perspectives are critical for successful implementation research.
Purpose of the Study:
- To describe the formation and activities of a Community Research Board (CRB) of parents.
- To gather parental insights on integrating genomic sequencing into NBS.
- To collaboratively develop strategies for equitable uptake of population genomic screening.
Main Methods:
- Formation of a diverse Community Research Board (CRB) comprising parents.
- Partnership between CRB members and genomic/public health researchers.
- Ongoing research activities focused on parental perspectives and strategy development.
Main Results:
- The CRB provides crucial insights into parental views on genomic sequencing in NBS.
- Contributions enhance research accessibility and recruitment methods.
- Strategies are being developed to promote trust and inclusivity in diverse communities.
Conclusions:
- Parental engagement through CRBs is vital for addressing barriers to genomic NBS.
- Collaborative approaches can improve the equitable implementation of population genomic screening.
- Maximizing societal benefit requires inclusive strategies for healthy children's genetic screening.
Abstract:
Recent advances in genomic sequencing and genomic medicine are reshaping the landscape of clinical care. As a screening modality, genetic sequencing has the potential to dramatically expand the clinical utility of newborn screening (NBS), though significant barriers remain regarding ethical, legal, and social implications (ELSI) and technical and evidentiary challenges. Stakeholder-informed implementation research is poised to grapple with many of these barriers, and parents are crucial stakeholders in this process. We describe the formation and activities of a Community Research Board (CRB) composed of parents with diverse backgrounds assembled to participate in an ongoing research partnership with genomic and public health researchers at the University of North Carolina. The mission of the CRB is to provide insight into parental perspectives regarding the prospect of adding genomic sequencing to NBS and collaboratively develop strategies to ensure its equitable uptake. We describe how these contributions can improve the accessibility of research and recruitment methods and promote trust and inclusivity within diverse communities to maximize the societal benefit of population genomic screening in healthy children.
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