Ownership of Biomedical Information in Biobanks
Translational research will increasingly rely on large collections of genomic and biomedical information held in biobanks and cohort studies. Those who are involved in the research process or who curate biobanks often use the concept of ‘ownership’ when they refer to the custodianship that they have over information in the biobank. There is also a widely accepted belief that individuals ‘own’ their personal information, particularly in the case of genetic information. However, information is incapable of being owned as a matter of law in the UK. The purpose of this paper is to demonstrate that ownership of genetic or medical information is not a reliable legal basis for protecting rights in relation to the information held in a biobank. Although ownership rights on information might seem intuitively appropriate or desirable, persisting with references to property and ownership may be misleading and any attempt to enforce such rights on the basis of ownership in law is unlikely to be successful. In this paper, we outline the rights that apply to personal information held in a biobank from the perspective of the donors of information to the biobank and from the perspective of the researchers who are the custodians of this information.
KeywordsTranslational Research Genomic Research Contractual Arrangement Physical Sample Biomedical Information
NH is a lecturer at University of Exeter School of Law and research associate at HeLEX - Centre for Health, Law and Emerging Technologies, University of Oxford. NK and LC are funded by the EPSRC as part of the EnCoRe Project, under grant code EP/G002541/1. JK is funded by the Wellcome Trust under grant code WT 081407/Z/06/Z. KM is funded by the NIHR Biomedical Research Centre, Oxford. PB is funded through the European Union FP6 Procardis project, number LSHM-CT-2007-037273. HG is funded by the ESRC under grant code RES-232-25-004.
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