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 d539, d1516, and d6895 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.

Patient attitudes towards prenatal diagnostic testing for inherited retinal disease

“…Advances in genetic technology, particularly the development of next‐generation sequencing and the introduction of whole‐exome sequencing, will allow low cost, rapid and readily accessible genetic testing for rare conditions, such as IRD. Recent studies have demonstrated demand for such testing among adults with IRD . A potential benefit would be to allow affected individuals and their relatives to make informed reproductive choices.…”

“…Recent studies have demonstrated demand for such testing among adults with IRD. [1][2][3][4][5][6] A potential benefit would be to allow affected individuals and their relatives to make informed reproductive choices.…”

Assessment of willingness to pay for expanded carrier screening among women and couples undergoing preconception carrier screening

“…This study included responses that are provided in the context of individuals who actually received the service, in contrast to prior studies, which evaluated WTP for hypothetically receiving the service. [ 7 , 13 , 14 , 34 , 37 , 38 , 42 , 43 ] This testing may not be relevant to everyone of reproductive age, so while our study may not reflect the perspectives of the entire adult population, it is focused on an appropriate subset.…”

Assessing Feasibility of Delivering Pharmacogenetic Testing in a Community Pharmacy Setting

“…For many patients, this may represent their first experience receiving a clinical test in a pharmacy setting. Many patients may be more will ing to be tested since there is no cost, but studies have indicated patients' willingness to pay for genetic tests, particularly for older patients, with higher income and perceived clinical and personal utility [56][57][58][59]. A supplemental study to the proposed survey, such as a focus group study, may be of value to gather additional feedback from patients.…”