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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.

Type

Chapter

Book title

Comparative Issues in the Governance of Research Biobanks

Publisher

Springer Verlag

Publication Date

28/01/2013

Total pages

339

Keywords

Science