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

Sarah Cunningham-Burley, Daniel L McCartney, Archie Campbell, Robin Flaig , Clare Orange, Carol Porteous, Mhairi Aitken, Ciaran C Mulholland, Sara Davidson, Selena McCafferty, Lee Murphy, Nicola Wrobel, Sarah McCafferty, Karen Wallace, David St Clair, Shona Kerr, Caroline Hayward, Andrew M McIntosh, Cathie L M Sudlow, Riccardo E MarioniJill Pell, Zosia Miedzybrodzka, David John Porteous

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

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 whether research use of newborn blood spots was in the public interest. We also assessed the feasibility and value of extracting research data from dried blood spots for predictive medicine.

Results
Jurors delivered an agreed verdict that conditional research access to the newborn blood spots was in the public interest. The Chief Medical Officer for Scotland authorised restricted lifting of the current research moratorium to allow a feasibility study. Newborn blood spots from consented Generation Scotland volunteers were retrieved and their potential for both epidemiological and biological research demonstrated.

Conclusions
Through the Citizens’ Jury, we have begun to identify under what conditions, if any, should researchers in Scotland be granted access to the archive. Through the feasibility study, we have demonstrated the potential value of research access for health data science and predictive medicine.
Original languageEnglish
Article number126
Number of pages8
JournalCommunications Medicine
Volume2
DOIs
Publication statusPublished - 6 Oct 2022

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