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Biobank research and the right to privacy

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Abstract

What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services.

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Notes

  1. This distinction alludes to the distinction between negative and positive liberty; see Berlin [9].

  2. In a liberal society, the individual’s rights to autonomy and privacy also extend to biobank information, albeit in a qualified way. The current biobank legislation in Norway, for instance, states that in order for research biobanks to be established in a legitimate way, there are three acceptable ways of relating to the participants, legally speaking: First, biobank information may be used if the individuals taking part waive their right to keep the relevant information private, and exercise self-determination by giving their informed consent. Second, biobank information may be used if the scientific goal and benefit clearly exceeds any inconvenience caused to the individual. Third, biobank information may be used if this right is specifically founded in the Biobank Act for the biobank concerned. This means that the interests of the individual, of society and of the researchers involved must be balanced. It is up to the law to state principles by which such a balance is achievable. In either case, privacy is a good which is protected by the relevant body.

  3. If the participants simply do not care about the use of the biobank material, the use of it would not compromise their freedom—even if they have given up their autonomy concerning this material. For the relation between autonomy and freedom in this context, see [23].

  4. For an elaboration of this point, see [25, 26].

  5. The idea of Warren and Brandeis, for instance, was to ground a right to privacy without extending the right to property, but on the contrary to subsume privacy within a more extensive right to be left alone [17].

  6. “Strictly speaking, autonomy is not so much a right but rather is the condition of having any rights at all. Because it is possible at the limit, however, to deny personal autonomy, it is not seriously incorrect to speak of autonomy as a right. In the same way, one may speak of a right to a private domain, or to privacy, in the sense that, as a person, one has (a right to) a “space” in which he is autonomous. But the right thus identified does not specify at all the shape or dimensions of the space or what it contains. It adds nothing, except by way of metaphor, to a reference to autonomy itself” [27, p. 34].

  7. For a detailed discussion of the ethics of commodification, see [35].

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Acknowledgements

The author thanks Berge Solberg, Bjørn Myskja, Domhnall Mitchell and Sophie Kasimow for valuable comments, and the staff at the Hastings Center for their comments, kind hospitality, and for providing the privacy needed to write this article.

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  1. Philosophy Department and Bioethics Research Group, Norwegian University of Technology and Science, 7491, Trondheim, Norway

    Lars Øystein Ursin

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Correspondence to Lars Øystein Ursin.

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Ursin, L.Ø. Biobank research and the right to privacy. Theor Med Bioeth 29, 267–285 (2008). https://doi.org/10.1007/s11017-008-9079-8

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