Variability in the storage and use of newborn dried bloodspots in Canada: is it time for national standards?

Abstract

Storage and secondary use of bloodspots collected for newborn screening raises controversies because of the particularly sensitive nature of the information that can be derived from them and the lack of national standards and consistent provincial policies that can serve to guide storage facilities. This report, derived through a review of Canadian and provincial policy statements, a survey of provincial newborn screening laboratory directors and program directors, as well as through a consultative workshop, illustrates the social, ethical and legal issues regarding the storage, access and further uses of newborn bloodspots. The report indicates that there is a need for heightened transparency and clear recommendations concerning the criteria for storage, the duration of storage, and permissible secondary uses of dried bloodspots in Canada.