Decision-Making About Newborn Screening Panels in Canada: Risk Management and Public Participation

Abstract

AbstractNewborn Bloodspot Screening (NBS) enables diagnosis and early treatment of rare diseases in non-symptomatic neonates. NBS has well-documented benefits for babies, their families, and the healthcare system at large. In recent decades, rapid advances in screening technologies enabled the proliferation of testable diseases. This has led to increased discussion of both the benefits relevant to decision-making but also the health, economic and ethical challenges associated with the expansion of NBS panels. However, technological capability is not the sole driver of panel expansions, and we suggest that decisions to add a condition to the screening panel constitute exercises in risk management. Using a risk governance lens, this chapter examines procedures that govern decision-making concerning screening panel additions in several Canadian NBS programs. Specifically, we draw on an analysis of documents in the public domain and interviews with individuals associated with Canadian NBS programs to identify the risk management tools that are applied. Our analysis indicates that there is a reliance on the advice of experts and economic controls but limited public participation in decisions about screening panels. We conclude with a discussion of why democratization might strengthen decision-making and offer recommendations to practitioners and scholars regarding next steps and future research.