Value of Knowing Risk of Developing Neurodegenerative Disease: A Discrete Choice Experiment


Crummer E1, Synnott P1, Vera-Llonch M2, Kymes S3, Ollendorf D1
1Tufts Medical Center, Boston, MA, USA, 2Ionis Pharmaceuticals, Boston, MA, USA, 3Ionis Pharmaceuticals, Carlsbad, CA, USA

OBJECTIVES: To explore the value attached to knowing the results of a genetic test on the risk of developing a neurodegenerative condition.

METHODS: We developed a discrete choice experiment (DCE), administered via survey to a nationally representative sample of adults identified from the NORC-AmeriSpeak panel. Hypothetical genetic tests for neurodegenerative disease varied in cost, type, and accuracy. Respondents were presented with 8 distinct choice tasks, each with two hypothetical tests and an opt-out option. Respondents were randomly assigned to scenarios that varied disease severity, perceived disease risk, treatment availability, and who the test is for (yourself, your child, or another loved one). We used a multinomial logit (MNL) model to estimate preferences, with willingness to pay (WTP) as the primary result.

RESULTS: A total of 1,034 respondents completed the survey. At a baseline cost of $2,000 for a genetic test, WTP is $583 higher for tests with a 0% chance of a false negative compared to a 5% chance, and $417 higher for the corresponding comparison in the case of a false positive. Test type (invasive or non-invasive) did not influence WTP. In subgroup analyses, respondents showed higher baseline WTP when presented with scenarios where the test was for a family member or child, the disease severity is fatal, or the perceived disease risk is high. Respondents who reported previously taking a genetic test (N=323) or caring for a loved one with a neurodegenerative disease (N=239) had higher baseline WTP.

CONCLUSIONS: These results indicate that, on average, individuals place substantial value on knowing their risk of developing a neurodegenerative disease. WTP increases with better test accuracy and previous experience with testing or neurodegenerative disease. The value is also greater if the test is for a loved one, the disease is severe, or the perceived risk is higher.

Conference/Value in Health Info

2024-05, ISPOR 2024, Atlanta, GA, USA

Value in Health, Volume 27, Issue 6, S1 (June 2024)




Economic Evaluation

Topic Subcategory

Novel & Social Elements of Value


Neurological Disorders, No Additional Disease & Conditions/Specialized Treatment Areas

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