Who decides and what are people willing-to-pay for whole genome sequencing information?

PURPOSE: Whole genome sequencing (WGS) can be used as a powerful diagnostic tool which could also be used for screening but may generate anxiety, unnecessary testing and overtreatment. Current guidelines suggest reporting clinically actionable secondary findings when diagnostic testing is performed. We estimated preferences for receiving WGS results. METHODS: A US nationally representative survey (n=410 adults) was used to rank preferences for who decides (expert panel, your doctor, you) which WGS results are reported. We estimated the value of information about variants with varying levels of clinical usefulness using willingness-to-pay contingent valuation questions. RESULTS: 43% preferred to decide themselves what information is included in the WGS report. 38% (95% CI:33–43%) would not pay for actionable variants, and 3% (95% CI:1–5%) would pay more than $1000. 55% (95% CI:50–60%) would not pay for variants in which medical treatment is currently unclear, and 7% (95% CI:5–9%) would pay more than $400. CONCLUSION: Most people prefer to decide what WGS results are reported. Despite valuing actionable information more, some respondents perceive that genetic information could negatively impact them. Preference heterogeneity for WGS information should be considered in the development of policies, particularly to integrate patient preferences with personalized medicine and shared decision making.