PUBLIC PREFERENCES FOR GENOMIC NEWBORN SCREENING IN CHINA: EVIDENCE FROM TWO DISCRETE CHOICE EXPERIMENTS
Author(s)
YANGYANG GAO, PhD1, Taoran Liu, PhD2, Wai-kit Ming, MBA, MPH, PhD, MD3.
1Department of Infectious Diseases and Public Health, City University of Hong Kong, HONG KONG, Hong Kong, 2Department of Infectious Diseases and Public Health, City University of Hong Kong, Hong Kong, Hong Kong, 3Department of Infectious Diseases and Public Health, City University of Hong Kong, City University of Hong Kong, Hong Kong.
1Department of Infectious Diseases and Public Health, City University of Hong Kong, HONG KONG, Hong Kong, 2Department of Infectious Diseases and Public Health, City University of Hong Kong, Hong Kong, Hong Kong, 3Department of Infectious Diseases and Public Health, City University of Hong Kong, City University of Hong Kong, Hong Kong.
OBJECTIVES: Genomic newborn screening (gNBS) could broaden conventional newborn screening by identifying substantially more genetic conditions at birth, but little quantitative evidence is available on how the Chinese public values alternative implementation models and result-return policies. We quantify public preferences for implementation strategies and report-content policies for genomic newborn screening in China.
METHODS: A national cross-sectional online survey conducted from August to December 2025 in mainland China. Adults aged 18 years or older completed 2 sequential discrete choice experiments. Respondents completed two sequential discrete choice experiments, one is implementation DCE, and one is result-return DCE. Part-worth utilities and relative importance estimated from Lighthouse aggregate logit models. Willingness-to-pay and predicted uptake estimated from mixed logit models. Preference heterogeneity explored using latent class and prespecified subgroup analyses.
RESULTS: The final analytic sample included 2095 respondents. In implementation DCE, cost per newborn accounted for 54.0% of relative importance, followed by privacy protection (20.0%) and testing organization (15.4%). Respondents preferred government institutions (=0.099; 95% CI, 0.085 to 0.113), high privacy protection (=0.140; 95% CI, 0.118 to 0.162), and low-cost or free testing (= 0.350; 95% CI, 0.321 to 0.379). In result-return DCE, VUS reporting dominated preferences (RI, 58.0%), followed by carrier-status reporting (19.5%) and actionability (10.8%). Respondents preferred medically actionable findings (= 0.055; 95% CI, 0.033 to 0.077), childhood-onset findings (=0.035; 95% CI, 0.014 to 0.057), and disclosure of VUS with explanation (= 0.245; 95% CI, 0.223 to 0.267). Predicted uptake increased from an unfavorable baseline scenario to 67.1% (95% CI, 64.6%-69.6%) when all favorable DCE1 attributes were combined.
CONCLUSIONS: Chinese adults expressed strong support for genomic newborn screening, but support was conditional on trustworthy implementation. Policy models most aligned with public preferences were government-led, strongly privacy-protective, affordable, and centered on medically actionable pediatric findings, with more flexible disclosure approaches for carrier status and variants of uncertain significance.
METHODS: A national cross-sectional online survey conducted from August to December 2025 in mainland China. Adults aged 18 years or older completed 2 sequential discrete choice experiments. Respondents completed two sequential discrete choice experiments, one is implementation DCE, and one is result-return DCE. Part-worth utilities and relative importance estimated from Lighthouse aggregate logit models. Willingness-to-pay and predicted uptake estimated from mixed logit models. Preference heterogeneity explored using latent class and prespecified subgroup analyses.
RESULTS: The final analytic sample included 2095 respondents. In implementation DCE, cost per newborn accounted for 54.0% of relative importance, followed by privacy protection (20.0%) and testing organization (15.4%). Respondents preferred government institutions (=0.099; 95% CI, 0.085 to 0.113), high privacy protection (=0.140; 95% CI, 0.118 to 0.162), and low-cost or free testing (= 0.350; 95% CI, 0.321 to 0.379). In result-return DCE, VUS reporting dominated preferences (RI, 58.0%), followed by carrier-status reporting (19.5%) and actionability (10.8%). Respondents preferred medically actionable findings (= 0.055; 95% CI, 0.033 to 0.077), childhood-onset findings (=0.035; 95% CI, 0.014 to 0.057), and disclosure of VUS with explanation (= 0.245; 95% CI, 0.223 to 0.267). Predicted uptake increased from an unfavorable baseline scenario to 67.1% (95% CI, 64.6%-69.6%) when all favorable DCE1 attributes were combined.
CONCLUSIONS: Chinese adults expressed strong support for genomic newborn screening, but support was conditional on trustworthy implementation. Policy models most aligned with public preferences were government-led, strongly privacy-protective, affordable, and centered on medically actionable pediatric findings, with more flexible disclosure approaches for carrier status and variants of uncertain significance.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
EPH267
Topic
Economic Evaluation, Epidemiology & Public Health, Health Service Delivery & Process of Care
Topic Subcategory
Public Health
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, Pediatrics