title: Willingness to pay for genetic testing for inherited retinal disease.
abstract: This paper investigates the willingness of adults with inherited retinal disease to undergo and pay for diagnostic genetic testing in three hypothetical scenarios and to explore the factors that influence decision making. Fifty patients were presented with three scenarios whereby genetic testing provided increasing information: confirming the diagnosis and inheritance pattern alone, providing additional information on future visual function, and identifying in addition a new treatment which could stabilise their condition. Willingness to pay (WTP) was elicited using an iterative bidding game. Regression analysis was used to investigate the probability of agreeing to and paying for testing. Qualitative data were also reviewed to provide a comprehensive understanding of WTP and decision making. The majority of participants agreed to undergo genetic testing in each of the three scenarios. Scenario 2 was the least acceptable with 78% of participants agreeing to genetic testing. The probability of agreeing to genetic testing decreased with age. Between 72 and 96% of participants reported a WTP for genetic testing. Average WTP was £539, £1516, and £6895 for scenarios 1, 2, and 3 respectively. Older participants and participants with higher incomes were willing to pay more for testing. Qualitative data provided additional detail about the rationale behind participants' decisions. The study suggests that patients with inherited retinal disease were willing to undergo and to pay for diagnostic genetic testing, suggesting that they valued the information it may provide. However, several patients preferred not to receive prognostic information and were less willing to pay for genetic testing that yielded such detail.
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Sandy
authors.initials: S
authors.lastname: Tubeuf
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Thomas A
authors.initials: TA
authors.lastname: Willis
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Barbara
authors.initials: B
authors.lastname: Potrata
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Hilary
authors.initials: H
authors.lastname: Grant
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Matthew J
authors.initials: MJ
authors.lastname: Allsop
authors.affiliation: Yorkshire Regional Genetics Service, Chapel Allerton Hospital, Leeds, UK.
authors.forename: Mushtaq
authors.initials: M
authors.lastname: Ahmed
authors.affiliation: Leeds Institute of Health Sciences, University of Leeds, Leeds, UK.
authors.forename: Jenny
authors.initials: J
authors.lastname: Hewison
authors.affiliation: Department of Ophthalmology, St James's University Hospital, Leeds, UK.
authors.forename: Martin
authors.initials: M
authors.lastname: McKibbin
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003657:Decision Making; D005260:Female; D030342:Genetic Diseases, Inborn / Q000175:diagnosis*; D005820:Genetic Testing / Q000191:economics*; D006801:Humans; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012164:Retinal Diseases / Q000175:diagnosis* / Q000235:genetics*; D011795:Surveys and Questionnaires; D055815:Young Adult