Association of Researcher Characteristics with Views on Return of Incidental Findings from Genomic Research

J Genet Couns. 2015 Oct;24(5):833-41. doi: 10.1007/s10897-014-9817-1. Epub 2015 Jan 17.

Abstract

Whole exome/ genome sequencing (WES/WGS) is now commonly used in research and is increasingly used in clinical care to identify the genetic basis of rare and unknown diseases. The management of incidental findings (IFs) generated through these analyses is debated within the research community. To examine how views regarding genomic research IFs are associated with researcher characteristics and experiences, we surveyed genetic professionals and assessed the effect of professional background and experience on their opinions. Researchers who did not have clinical training, provide clinical care to research participants, or have prior experience returning research results were in general more inclined to offer return of IFs than their colleagues with these characteristics. Understanding this will be important to fully appreciate the impact that policies on return of genetic IFs could have on participants, researchers, and genomic research.

Keywords: Genetics research; Genomic results; Genomics; Incidental findings; Return of results; Secondary findings; Whole exome sequencing.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Attitude of Health Personnel*
  • Genome, Human*
  • Genomics
  • Humans
  • Incidental Findings*
  • Male
  • Professional Competence / statistics & numerical data
  • Research Personnel / psychology*
  • Surveys and Questionnaires