Storage, Use and Access to the Scottish Guthrie Card Collection: Ethical, Legal, and Social Issues

This report considers the ethical, legal and social issues surrounding the existence, continued storage and future uses of the newborn screening collection held in Scotland (also known as the Guthrie card collection). The report was written over a four year period, 2009-2013, during which time earlier drafts of the report ensured that Guthrie Cards were included in the developing governance regime for biomedical collections within Scotland. This final version is an account of developments as of April 2013 and involves 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.