What are people willing to pay for whole-genome sequencing information, and who decides what they receive?

ABSTRACT:

Purpose

Whole-genome sequencing (WGS) can be used as a powerful diagnostic tool as well as for screening, but it may lead to anxiety, unnecessary testing, and overtreatment. Current guidelines suggest reporting clinically actionable secondary findings when diagnostic testing is performed. We examined preferences for receiving WGS results.

Methods

A US nationally representative survey (n = 410 adults) was used to rank preferences for who decides (an expert panel, your doctor, you) which WGS results are reported. We estimated the value of information about variants with varying levels of clinical usefulness by using willingness to pay contingent valuation questions.

Results

The results were as follows: 43% preferred to decide themselves what information is included in t

SUBMITTER: Marshall DA 

PROVIDER: S-EPMC5133139 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature