title: What are people willing to pay for whole-genome sequencing information, and who decides what they receive?
abstract: 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.
  
  
  
  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.
  
  
  
  The results were as follows: 43% preferred to decide themselves what information is included in the WGS report. 38% (95% confidence interval (CI): 33-43%) would not pay for actionable variants, and 3% (95% CI: 1-5%) would pay more than $1,000. 55% (95% CI: 50-60%) would not pay for variants for which medical treatment is currently unclear, and 7% (95% CI: 5-9%) would pay more than $400.
  
  
  
  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.Genet Med 18 12, 1295-1302.
authors.affiliation: Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Deborah A
authors.initials: DA
authors.lastname: Marshall
authors.affiliation: Research Triangle Institute, Research Triangle Park, North Carolina, USA.
authors.forename: Juan Marcos
authors.initials: JM
authors.lastname: Gonzalez
authors.affiliation: Duke Clinical Research Institute, Duke University, Durham, North Carolina, USA.
authors.forename: F Reed
authors.initials: FR
authors.lastname: Johnson
authors.affiliation: Department of Community Health Sciences, University of Calgary, Calgary, Alberta, Canada.
authors.forename: Karen V
authors.initials: KV
authors.lastname: MacDonald
authors.affiliation: Research Triangle Institute, Research Triangle Park, North Carolina, USA.
authors.forename: Amy
authors.initials: A
authors.lastname: Pugh
authors.affiliation: Department of Clinical Pharmacy, Center for Translational and Policy Research on Personalized Medicine (TRANSPERS), University of California at San Francisco, San Francisco, California, USA.
authors.forename: Michael P
authors.identifier: 0000-0001-8517-6678
authors.initials: MP
authors.lastname: Douglas
authors.affiliation: UCSF Philip R. Lee Institute for Health Policy, University of California at San Francisco, San Francisco, California, USA.|UCSF Helen Diller Family Comprehensive Cancer Center, University of California at San Francisco, San Francisco, California, USA.
authors.forename: Kathryn A
authors.initials: KA
authors.lastname: Phillips
mesh_terms: D001294:Attitude to Health; D003657:Decision Making; D015894:Genome, Human / Q000235:genetics*; D017048:Health Care Costs; D059014:High-Throughput Nucleotide Sequencing / Q000191:economics* / Q000379:methods; D006801:Humans