WHAT ARE PEOPLE WILLING TO PAY FOR WHOLE GENOME SEQUENCING INFORMATION?
Author(s)
Marshall DA1, Gonzalez JM2, Johnson FR3, Pugh A2, MacDonald KV4, Douglas MP5, Phillips KA5
1Alberta Bone and Joint Health Institute, Calgary, AB, Canada, 2RTI Health Solutions, Research Triangle Park, NC, USA, 3Duke University, Durham, NC, USA, 4University of Calgary, Calgary, AB, Canada, 5University of California – San Francisco, San Francisco, CA, USA
OBJECTIVES: Whole genome sequencing (WGS) can be used to predict future disease risk or inform treatment. Current guidelines suggest only reporting variants that are clinically actionable. Reporting incidental or non-actionable findings could generate anxiety and unnecessary medical tests, but patients could miss valuable information if not reported. Over-treatment may occur by acting on findings prematurely, potentially causing harm and unnecessary resource use. We measure the value of WGS information using contingent valuation methods. METHODS: An online pilot survey (n=26 adults from US general population) was used to evaluate willingness to pay for a basic WGS report (recommended by guidelines), and genetic information excluded from the basic report (non-actionable findings) to inform a national survey. Respondents were initially asked whether they would purchase a basic WGS report for a specified dollar amount. A follow-up question increased or decreased cost of the report based on the initial response. Responses were used to identify ranges of willingness to pay for a basic report for each respondent. The same steps were followed to identify ranges for respondents’ willingness to pay for information excluded from the WGS report. The initial costs in the questions were randomized across respondents. RESULTS:
Conference/Value in Health Info
2015-05, ISPOR 2015, Philadelphia, PA, USA
Value in Health, Vol. 18, No. 3 (May 2015)
Code
PND45
Topic
Health Policy & Regulatory, Patient-Centered Research
Topic Subcategory
Public Spending & National Health Expenditures, Stated Preference & Patient Satisfaction
Disease
Multiple Diseases, Rare and Orphan Diseases