June 2017: a Citizens Jury debated the question 'Is research access to the Guthrie Card new born blood spots in the public interest?'
Over two successive Saturdays in June, a Citizens Jury debated the question 'Is research access to the Guthrie Card new born blood spots in the public interest?' Organised by Professors David Porteous (CGEM) and Sarah Cunningham-Burley (Usher Institute and Head of School) and supported by Wellcome Trust Institutional Research Support Funding, the objective was to seek public opinion for or against research access to the newborn blot spots that have been routinely collected
since the 1960's in Scotland and stored for potential future use since the 1980's. Newborn blood spot screening is also known as the heel prick test, and is usually taken at around 5 days old, to identifiy whether a baby has one of nine rare but serious health conditions.
There are numerous possibilities for making use of this collection, including for health and medical research, but as yet there is no dedicated legal framework that applies to it. Currently, there is a moratorium on access, pending a public consultation. In the absence of any sign of a government led enquiry, and based upon informal and positive feedback from early public engagements (see report on 'Science Saturday' and 'Big ideas' events last year with the National museum of Scotland, David and Sarah decided that it would be appropriate to commission IPSOS Mori to run a formal Citizens Jury to address the question. Their formal report is expected in August.
Science Saturday - Would you have your genome sequenced?
Big Ideas - Genome testing, a choice?