Whose Biobank? Should Biobanks Serve Research Interests or the Needs for Personalized Medicine? Analysis of the Hungarian Law.

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Abstract

AIMS:

The law has struggled to justify the unilateral use of individual genomic data, as it could never quite fit either into the narrower data protection or the broader privacy frameworks. This article aims to explore this tension by examining rights and interests of biobank participants.

METHOD:

This article offers a legal analysis, by looking at how the biobank model fits into a privacy rights framework. The Hungarian law is the primary focus of analysis, but reference is made to international legal norms, as well.

RESULTS:

The first biobanks were designed with the purpose of achieving collective goals by providing private data from the individual gene donors to scientific research and to the biotechnology industry. The main focus was on data protection. Today, more and more people, however, opt for an active biological citizenship: they want to have access to the results that are relevant to their health. The paternalistic legal attitude does not seem to fit this request to transfer data.

DISCUSSION/CONCLUSION:

In the long run, people should have the possibility to contact a biobank and to ask for the return of results. Practical barriers do not constitute a valid argument against the individual's need for disclosure. The law should be on people's side.