Returning negative results to individuals in a genomic screening program: lessons learned.

ABSTRACT:

Purpose

In genomics, the return of negative screening results for rare, medically actionable conditions in large unselected populations with low prior risk of disease is novel and may involve important and nuanced concerns for communicating their meaning. Recruitment may result in self-selection because of participants' personal or family history, changing the characteristics of the screened population and interpretation of both positive and negative findings; prior motivations may also affect responses to results.

Methods

Using data from GeneScreen, an exploratory adult screening project that targets 17 genes related to 11 medically actionable conditions, we address four questions: (1) Do participants self-select based on actual or perceived risk for one of the conditions?

SUBMITTER: Butterfield RM 

PROVIDER: S-EPMC6281871 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature