Unraveling non‐participation in genomic research: A complex interplay of barriers, facilitators, and sociocultural factors

Abstract excerpt

Although genomic research offering next-generation sequencing (NGS) has increased the diagnoses of rare/ultra-rare disorders, populations experiencing health disparities infrequently participate in these studies. The factors underlying non-participation would most reliably be ascertained from individuals who have had the opportunity to participate, but decline. We thus enrolled parents of children and adult...

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