TO TEST OR NOT TO TEST? BEST-WORST SCALING TO UNDERSTAND PREFERENCES FOR GENETIC TESTING AMONG MODERATE-RISK INDIVIDUALS
Author(s)
Carina Oedingen, PhD, Nicolle Hua, MGenCouns, BSc, Julien Marcadier, MD, Renee Perrier, MD, Lindsay Tuer, MSc, Brenda McInnes, MSc, Francois Bernier, PhD, Deborah A. Marshall, PhD;
University of Calgary, Calgary, AB, Canada
University of Calgary, Calgary, AB, Canada
OBJECTIVES: Genetic testing is usually offered to individuals at high risk of carrying disease-causing variants. However, genetic testing could also support early detection, prevention and treatment for those at moderate risk. This study estimates the relative importance of factors influencing decision-making about primary genetic testing of moderate-risk individuals.
METHODS: Individuals at moderate risk of breast cancer or aortic disease are currently being recruited through genetic clinics to complete an online survey after deciding whether to have genetic testing, but before receiving the test results. The online survey contains a case 1 best-worst scaling (BWS-1). Thirteen items focused on personal factors, test procedures/processes and potential outcomes were selected based on results of a scoping review and input from clinical experts, and a balanced incomplete block design was used. In the BWS-1, individuals were asked to select the most (best) and least (worst) important factors in their decision-making. Data were analyzed using count-based approach.
RESULTS: Data collection began in March 2025 and is expected to be completed by spring 2026. A total of 77 respondents (n=68 breast cancer, n=9 aortic disease) were included in the preliminary analyses. The cohort had a mean age of 51.3 (±12.2) years and the majority reported to have pre-existing health conditions (81%). Preferences for genetic testing were primarily driven by anticipated benefits for personal health, including ‘disease prevention’ (normalized BWS-score:1.0), ‘informing future healthcare decisions’ (score:0.89), and ‘informing family members of their own disease risk’ (score:0.83). The three least important factors for decision-making were ‘data access outside of healthcare team’ (score:0.13), ‘turnaround time’ (score:0.01), and ‘help with family planning’ (score:0.0).
CONCLUSIONS: Preliminary analyses show that testing preferences are driven by beneficial outcomes associated with genetic testing. Exploring preferences for moderate-risk individuals can inform clinical and health policy decision-makers in planning and offering genetic testing programs in the future.
METHODS: Individuals at moderate risk of breast cancer or aortic disease are currently being recruited through genetic clinics to complete an online survey after deciding whether to have genetic testing, but before receiving the test results. The online survey contains a case 1 best-worst scaling (BWS-1). Thirteen items focused on personal factors, test procedures/processes and potential outcomes were selected based on results of a scoping review and input from clinical experts, and a balanced incomplete block design was used. In the BWS-1, individuals were asked to select the most (best) and least (worst) important factors in their decision-making. Data were analyzed using count-based approach.
RESULTS: Data collection began in March 2025 and is expected to be completed by spring 2026. A total of 77 respondents (n=68 breast cancer, n=9 aortic disease) were included in the preliminary analyses. The cohort had a mean age of 51.3 (±12.2) years and the majority reported to have pre-existing health conditions (81%). Preferences for genetic testing were primarily driven by anticipated benefits for personal health, including ‘disease prevention’ (normalized BWS-score:1.0), ‘informing future healthcare decisions’ (score:0.89), and ‘informing family members of their own disease risk’ (score:0.83). The three least important factors for decision-making were ‘data access outside of healthcare team’ (score:0.13), ‘turnaround time’ (score:0.01), and ‘help with family planning’ (score:0.0).
CONCLUSIONS: Preliminary analyses show that testing preferences are driven by beneficial outcomes associated with genetic testing. Exploring preferences for moderate-risk individuals can inform clinical and health policy decision-makers in planning and offering genetic testing programs in the future.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR165
Topic
Patient-Centered Research
Disease
SDC: Cardiovascular Disorders (including MI, Stroke, Circulatory), SDC: Oncology, STA: Personalized & Precision Medicine