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Published on: January 28, 2014
Feasibility and ethics of using data from the Scottish newborn blood spot archive for research
Sarah Cunningham-Burley1, Daniel L McCartney2, Archie Campbell2
1Centre for Biomedicine, Self and Society, Usher Institute, University of Edinburgh, 23 Buccleuch Place, Edinburgh, EH8 9LN UK.
Insights
Newborn blood spot archives can be used for research, with conditional access deemed in the public interest. A feasibility study demonstrated the value of this data for health data science and predictive medicine.
Area of Science:
- Genetics and Genomics
- Public Health
- Bioethics
Background:
- Newborn heel prick blood spots are routinely screened for inherited disorders.
- Scotland's archive of 3 million blood spots since 1965 presents potential for retrospective birth cohort studies.
- Current moratorium on research access requires ethical and feasibility assessment for public benefit.
Purpose of the Study:
- To explore public interest in research use of newborn blood spots via a Citizens' Jury.
- To assess the feasibility and value of extracting research data from dried blood spots for predictive medicine.
Main Methods:
- A Citizens' Jury convened to deliberate on research access to newborn blood spots.
- A feasibility study involving retrieval of blood spots from consented volunteers.
- Demonstration of potential for epidemiological and biological research.
Main Results:
- Citizens' Jury reached a consensus that conditional research access is in the public interest.
- The Chief Medical Officer authorized a restricted lifting of the research moratorium.
- Feasibility study successfully retrieved and analyzed blood spots, demonstrating research potential.
Conclusions:
- Conditional research access to newborn blood spots is supported by public deliberation.
- Feasibility study confirms the significant value of blood spot archives for health data science and predictive medicine.
- Identified conditions for researcher access to the Scottish newborn blood spot archive.
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.
