Poster ID
P-30
Poster Title
Public preferences for genomic newborn screening in Singapore: findings from two discrete choice experiments
Authors
Toh Hui Jin (1), Serene Ong (1), Neal Ryan Rui Yang Friets (1), Sinead Prince (1), Julian Savulescu (1), G. Owen Schaefer (1).
(1). Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
(1). Centre for Biomedical Ethics, Yong Loo Lin School of Medicine, National University of Singapore
Abstract
Background: Genomic newborn screening (gNBS) raises ethical questions about how programme design should reflect public values around benefit, harm, autonomy, and equity. Scaling up gNBS will require careful integration of ethical and practical considerations to ensure continued public acceptance and uptake. We report findings from two discrete choice experiments (DCEs) examining public preferences for gNBS programme design and delivery in Singapore.
Methods: A value DCE (N=646) and an implementation DCE (N=760) were administered to Singaporean adults in March–April 2026. These DCEs were adapted from a survey instrument designed for use in the Australian population. The value DCE examined six attributes: screening cost, accuracy, diagnostic yield, condition severity, penetrance, and treatment availability. The implementation DCE examined eight attributes: timing of initial discussion, management of new information, available support materials, who provides initial information, how and by whom high-chance results are returned, how low-chance results are returned, and what conditions are included in the programme.
Results: Overall support for gNBS was 78.5%. Cost (35.2%) and accuracy (33.0%) dominated value preferences. Respondents wanted gNBS to detect more conditions, but primarily ones that can be acted upon. As the number of untreatable conditions in the programme grew, support for a more restrictive, treatment-oriented programme increased.
In the implementation DCE, 56.8% preferred opt-in consent. Timing of initial discussion was the top implementation priority (20.5%), with first antenatal appointment strongly preferred — suggesting that ethically adequate consent requires early engagement. Respondents also preferred receiving initial information from a specialist, in-person return of high-chance results from a genetic health professional, and automatic updates when new genomic findings become available. These results suggest that people expect gNBS to be an ongoing, professionally supported process.
Conclusions: Public preferences reflect ethically significant values: autonomy, actionability, accuracy, and equitable access. These findings provide empirical evidence for responsible, publicly endorsed gNBS governance in Singapore.
Methods: A value DCE (N=646) and an implementation DCE (N=760) were administered to Singaporean adults in March–April 2026. These DCEs were adapted from a survey instrument designed for use in the Australian population. The value DCE examined six attributes: screening cost, accuracy, diagnostic yield, condition severity, penetrance, and treatment availability. The implementation DCE examined eight attributes: timing of initial discussion, management of new information, available support materials, who provides initial information, how and by whom high-chance results are returned, how low-chance results are returned, and what conditions are included in the programme.
Results: Overall support for gNBS was 78.5%. Cost (35.2%) and accuracy (33.0%) dominated value preferences. Respondents wanted gNBS to detect more conditions, but primarily ones that can be acted upon. As the number of untreatable conditions in the programme grew, support for a more restrictive, treatment-oriented programme increased.
In the implementation DCE, 56.8% preferred opt-in consent. Timing of initial discussion was the top implementation priority (20.5%), with first antenatal appointment strongly preferred — suggesting that ethically adequate consent requires early engagement. Respondents also preferred receiving initial information from a specialist, in-person return of high-chance results from a genetic health professional, and automatic updates when new genomic findings become available. These results suggest that people expect gNBS to be an ongoing, professionally supported process.
Conclusions: Public preferences reflect ethically significant values: autonomy, actionability, accuracy, and equitable access. These findings provide empirical evidence for responsible, publicly endorsed gNBS governance in Singapore.
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