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

ABSTRACT: 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 probands with undiagnosed disorders who had declined genomic research offering NGS with return of results with undiagnosed disorders (Decliners, n = 21) and compared their data to those who participated (Participants, n = 31). We assessed: (1) practical barriers and facilitators, (2) sociocultural factors-genomic knowledge and distrust, and (3) the value placed upon a diagnosis by those

SUBMITTER: McConkie-Rosell A 

PROVIDER: S-EPMC10542653 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature