This project addresses the bioethical problem of health disparities resulting from under-representation of ethnic and racial minorities in genomic research that informs the integration of genomic sequencing into newborn screening (NBS). The aims are to explore the views of minority parents on enrolling their child in genomic research and on the use of genomic sequencing in NBS. This project is significant as it will lead to strategies for enrolling families from diverse communities in genomic research, and to recommended policies on the equitable integration of genomic sequencing in NBS.
Understanding perspectives on genomic research in an ethnically and racially diverse cohort of parents
Boston Children’s Hospital