Defining biobanks, categorising biobanks effectively for governance purposes, consent (especially under the Human Tissue Act 2004), harmonising terminology, providing feedback to participants, rationalising legal and ethical frameworks, and re-appraising the subsisting data–tissue regulatory dichotomy.
Sue is a Senior Research Associate in Law at the Ethox Centre, University of Oxford. Her main research interests are in biomedical law (with a particular emphasis on law and genetics), governance (including regulatory theory, design, and implementation), civil procedure, and human rights. Her background is in civil litigation and private legal practice in New Zealand, where she worked as a barrister and senior solicitor before moving to the UK. She holds a BCL degree and a doctorate in civil procedure, and taught on that subject at postgraduate level at Oxford for many years.
Sue’s involvement with medical law and genetics began in early 2004, when she joined the Ethox Centre as a legal researcher on the EU-funded ELSAGEN Biobank project. That multi-disciplinary project involved collaborations between teams in Iceland, Estonia, Sweden, and the UK, examining the ethical, legal, and social aspects of human genetic databases. Subsequently, Sue worked at Ethox on a three-year, Wellcome Trust-funded project, entitled ‘Governing Genetic Databases’. That project, which ran from November 2005 until early 2009, sought to develop theoretically sound, empirically informed and workable recommendations for designing more effective, practical models for governing biobanks in England and Wales. As well as examining a wide range of theoretical and substantive legal issues associated with biobanks and regulation, Sue’s work included a detailed mapping of existing biomedical governance frameworks, socio-legal analysis of qualitative empirical data, and organising a one-day legal workshop for 50 researchers, scientists, and other biobanking professionals from around the UK.
In addition to collaborating on a forthcoming book of the ‘Governing Genetic Databases’ project, Sue’s current research and writing projects include issues to do with defining biobanks, categorising biobanks effectively for governance purposes, consent (especially under the Human Tissue Act 2004), harmonising terminology, providing feedback to participants, rationalising legal and ethical frameworks, and re-appraising the subsisting data–tissue regulatory dichotomy.
- Gibbons Susan and Kaye Jane (2007) Governing Genetic Databases: Collection, Storage and Use King's Law Journal, 18:201-208.
- Gibbons S M and Kaye J (2007) GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE Kings Law J, 18(2):ukpmcpa1468.
- Gibbons Susan MC, Helgason Hordur H, Kaye Jane, Nomper Ants, and Wendel Lotta (2005) Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom Eur J Health Law, 12(2):103-33.