Feasibility and ethics of using data from the Scottish newborn blood spot archive for research
28 February 2023 | Author: Carl Marincowitz, Clinical Lecturer in Emergency Medicine
The HDR UK Impact Commitee selected a paper by Cunningham-Burley et al as the Open Impact Publication of the Month.
Each month, the Impact Committee considers dozens of open access articles and scores them on how well they demonstrate the core pillars of the HDR UK ethos:
- Research quality
- Team science
- Open science
- Patient and public involvement
- Equality, diversity and inclusion
The committee chose Feasibility and ethics of using data from the Scottish newborn blood spot archive for research (Cunningham-Burley et al) as the January 2023 Open Access Publication of the Month.
Following the Adler Hey scandal regarding unauthorised retention and use of human tissue, there has rightly been increased regulation and scrutiny regarding the use of routinely clinically collected biological samples for research purposes in the UK. There has previously been a moratorium, pausing the use of historically collected heel prick blood samples for research purposes in Scotland.
This paper used public juries in Scotland to assess the ethical implications and potential public benefit of using heel prick blood samples routinely collected from newborn babies to screen for diseases for research purposes. They also assessed the feasibility of using such archived blood samples for ongoing research.
The use of citizen juries to adjudicate on difficult ethical issues in health research is a novel aspect of the study. Jurors were specifically selected be representative of Scottish demographics, and included stake holder groups representing patients with diseases that are screened for by heel prick tests.
Jurors met for two day-long sittings to hear evidence (neutral, for and against), deliberate and reach conclusions. The citizen jury concluded that use of stored heel prick blood samples for research was in the public interest but required appropriate oversight, monitoring and regulation.
Based on this finding, the moratorium on using heel prick samples for research was lifted and blood spot samples from consented volunteers were retrieved. Blood spots could be linked to other health records of consented volunteers and useful testing could be performed on tests stored for over 30 years.
Meeting our criteria
This paper represented a high level of research excellence across all our scoring criteria. It utilised large-scale population-level datasets and therefore scored highly on our scale criterion, as well as realising significant potential for impact public health research. What was particularly impressive about this paper was the use of citizen juries as a way to involve patients and the public to address a difficult ethical issue and direct future research.
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