Views of adults living with sickle cell disease on the theoretical return of secondary genomic findings.

ABSTRACT:

Purpose

Although the body of research investigating research participants' opinions on the return of actionable secondary genomic findings grows, there has been limited study of individuals with genetic conditions, such as sickle cell disease (SCD). It is imperative that the views of diverse research participants on return of results (RoR) be investigated and rooted in the context of advancing health equity in genomics research.

Methods

We conducted qualitative, semi-structured interviews with 30 adults living with SCD with differing insurance coverages and utilized a directed content analysis to derive themes.

Results

Study findings show that living with SCD is a key influence on views of RoR. Participants were in favor of RoR while expressing concern regarding the b

SUBMITTER: Floyd KJ 

PROVIDER: S-EPMC10859184 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature