Good governance of Guthrie cards in Scotland
Professor Graeme Laurie of Edinburgh Law School was, with colleagues Kathryn Hunter and Professor Sarah Cunningham-Burley (medical sociology), commissioned by Scottish Government from 2009 to 2013 to undertake a review of the Scottish Guthrie card collection and to make recommendations about its effective governance and future uses.
The Scottish Guthrie card collection began in 1965 and now contains more than 2.5 million cards which include blood and DNA samples and personal information relating to children born in Scotland since the inception of the collection until the present day. Numerous purposes are possible with respect to this collection but there is no dedicated legal framework that applies to it.
The prospect of the Guthrie collection being seen as a ‘de facto DNA database’ means that these issues require on-going attention. Challenges to the use of similar newborn screening collections in other countries such as Australia, Ireland, New Zealand, and the United States have demonstrated that failure to address the issues appropriately and in a timely fashion can have very serious consequences which might include the destruction of whole. Such outcomes are not, however, inevitable. Scotland can learn much from what happened in other countries. This report highlights some of the pertinent lessons.
The commissioned report considers the ethical, legal and social issues surrounding the existence, continued storage and future uses of the collection held in Scotland. The report was written over a four year period from 2009 to 2013. Earlier drafts of the report ensured that Guthrie Cards were included in the developing governance regime for biomedical collections within Scotland.
The final version is an account of developments up to April 2013 and includes an evaluation of the current arrangements as far as this is possible in a fast-moving field. The report also serves as a platform for future dialogue and development in light of wider social and international changes that are occurring, most notably in terms of the growing role for empowered citizens to contribute to, and benefit from, the future direction of health-related research.
The report argues that a robust, flexible and adaptive system is required to govern the Scottish Guthrie card collection. This must remain fit-for-purpose over time and must strike a delicate balance between maximising the value of the collection as a public resource to be managed for the public good while minimising the risks to individuals whose samples and data are held as part of the collection. While much attention has been paid to governance arrangements in the last four years, current practices could be improved further towards an optimal governance system for the collection and which would strike the appropriate balance of interests.
The report details options for consideration as to how practices could be improved. It is argued that public engagement should be undertaken in the development, implementation and on-going operation of policies with respect to the collection and potential and future uses.
Since the publication of the report, a wider team of colleagues has been involved in research health research regulation, of which Dr Edward Dove spoke to the contents of the report at a ScotGov meeting in January 2019. This meeting brought together key stakeholders to explore next steps in governance of the collection, including the prospect of a public engagement exercise.
This page will be updated regularly as developments occur.
Guthrie Cards in Scotland: Ethical, Legal and Social Issues (download the full Report)