Processes and factors involved in decisions regarding return of incidental genomic findings in research.

ABSTRACT:

Purpose

Studies have begun exploring whether researchers should return incidental findings in genomic studies, and if so, which findings should be returned; however, how researchers make these decisions-the processes and factors involved-has remained largely unexplored.

Methods

We interviewed 28 genomics researchers in-depth about their experiences and views concerning the return of incidental findings.

Results

Researchers often struggle with questions concerning which incidental findings to return and how to make those decisions. Multiple factors shape their views, including information about the gene variant (e.g., pathogenicity and disease characteristics), concerns about participants' well-being and researcher responsibility, and input from external entities. Rese

SUBMITTER: Klitzman R 

PROVIDER: S-EPMC3966970 | biostudies-literature | 2014 Apr

REPOSITORIES: biostudies-literature