Biobank Report: United Kingdom

Abstract

The United Kingdom is a leader in genomics research, and the presence of numerous types of biobanks and the linking of health data and research within the UK evidences the importance of biobank-based research in the UK. There is no biobank-specific law in the UK and research on biobank materials is governed by a confusing set of statutory law, common law, regulations, and guidance documents. Several layers of applicable law, from European to local, further complicate an understanding of privacy protections. Finally, biobanks frequently contain data in addition to the samples; the legal framework in the UK generally differentiates between data and samples and the form of the data affects the applicability of legal provisions. Biobanks must be licensed by the Human Tissue Authority; certain projects must be reviewed by Research Ethics Committees, and all projects are encouraged to be reviewed by them. Data Access Committees in biobanks are also common in the UK. While this confusing array of legal provisions leaves privacy protections in biobanking somewhat unclear, changes at the EU level may contribute to harmonization of approaches to privacy.

Human Biobanking in Developed and Developing Countries: An Ethico-Legal Comparative Analysis of the Frameworks in the United Kingdom, Australia, Uganda, and South Africa

“…5 Apart from the national population-scale UK Biobank, there are several other biobanks, including small-scale biobanks; university research biobanks; clinicbased biobanks; and specific disease-focused biobanks which operate within the UK. 6 Needless to say, with several biobank projects currently underway, and a national population-scale biobank, which supports the investigation into a wide range of diseases occurring in the local population, the UK is a developed country at the forefront of biobank research in Europe.…”

A Canadian survey of patients’ attitudes toward donation of products of conception for research at the time of their aspiration abortion

“…These tissues, which include placenta, decidua, and fetal tissues, contribute to numerous areas of clinical research such as pregnancy complications, developmental biology, stem cell research, immunology, neurology, and oncology [2][3][4][5][6][7] . Tissue biobanks, some of which include products of conception, have been developed worldwide, including in Canada, to facilitate high quality and accessible medical research [8][9][10][11][12] . The transla-tion of this biomedical research into clinical practice has had far reaching medical and public health benefits including Nobel Prize winning research on vaccine development from which nearly everyone in modern society has benefited [13] .…”