Abstract
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.
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- 1.
A small number of recent studies discuss the views of research participants and researchers on ownership of samples and data in research, e.g. Cadigan et al. (2011) and Capron et al. (2009). These studies concentrate on people’s views about physical samples and have found uncertainty and lack of consensus about ownership. They also include some findings about data (information), which reveal confusion amongst participants and researchers regarding the legal protection of samples and data. A recent study in the UK has found that lack of knowledge on how samples and data are protected differently in law can cause uncertainty amongst biobanking researchers over how these entities can be protected effectively (Whitley et al. 2012).
- 2.
Also as summarised in Curren (2010).
- 3.
Kaye et al. (2009).
- 4.
Hardcastle (2009).
- 5.
- 6.
- 7.
Hardcastle (2009); Fairstar Heavy Transport NV v Adkins [2012] EWHC 2952 (TCC) at [69]; Phillips v Mulcaire [2012] UKSC 28 at [20]; Douglas & Ors v Hello! Ltd & Ors [2007] UKHL 21 at [275]; Douglas & Ors v Hello Ltd. & Ors [2005] EWCA Civ 595; Oxford v Moss (1979) 68 Cr App R 183; Boardman v Phipps [1967] 2 AC 46.
- 8.
Rolls Royce v Jeffrey [1962] 1 All ER 801; Herbert Morris v Saxelby [1916] 1 AC 688.
- 9.
- 10.
Stuckey (1981).
- 11.
And in any case, the patient would not be the owner of the copyright—copyright would vest in the creator of the information (i.e. the doctor who wrote the record) or their employer.
- 12.
Washington University v Catalona 490 F 3d 667 (2007) (United States Court of Appeals, Eighth Circuit); Dickenson (2008).
- 13.
D’Agostino et al. (2008); Copyright, Designs and Patents Act 1988 s 3(1)(d).
- 14.
Directive 96/9/EC of the European Parliament and of the Council of 11 March 1996 on the Legal Protection of Databases.
- 15.
Terry et al. (2007).
- 16.
Moore v Regents of the University of California 793 P 2d 479 (Cal SC 1990).
- 17.
Greenberg v Miami Children’s Hospital Research Institute 208 F. Supp.2d 918 (2002).
- 18.
Kanellopoulou (2009).
- 19.
Harmon (2010).
- 20.
Bridge (2002).
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Acknowledgements
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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Hawkins, N. et al. (2013). Ownership of Biomedical Information in Biobanks. In: Pascuzzi, G., Izzo, U., Macilotti, M. (eds) Comparative Issues in the Governance of Research Biobanks. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-33116-9_5
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