Feasibility and ethics of using data from the Scottish newborn blood spot archive for research.

ABSTRACT:

Background

Newborn heel prick blood spots are routinely used to screen for inborn errors of metabolism and life-limiting inherited disorders. The potential value of secondary data from newborn blood spot archives merits ethical consideration and assessment of feasibility for public benefit. Early life exposures and behaviours set health trajectories in childhood and later life. The newborn blood spot is potentially well placed to create an unbiased and cost-effective population-level retrospective birth cohort study. Scotland has retained newborn blood spots for all children born since 1965, around 3 million in total. However, a moratorium on research access is currently in place, pending public consultation.

Methods

We conducted a Citizens' Jury as a first step to explore w

SUBMITTER: Cunningham-Burley S 

PROVIDER: S-EPMC9537278 | biostudies-literature | 2022

REPOSITORIES: biostudies-literature