Chapter

The Ethics of Biomedical Big Data

Volume 29 of the series Law, Governance and Technology Series pp 119-137

Date:

Many Have It Wrong – Samples Do Contain Personal Data: The Data Protection Regulation as a Superior Framework to Protect Donor Interests in Biobanking and Genomic Research

  • Dara HallinanAffiliated withFIZ Karlsruhe – Leibniz Institute for Information Infrastructure Email author 
  • , Paul De HertAffiliated withLaw, Science, Technology and Society (LSTS), Vrije Universiteit Brussel-RC-Juri

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Abstract

Genomic research relies on the availability of genomic data. Detached biological samples, stored in facilities known as biobanks, are the source of this data. Donors have interests in these samples. In particular, donors have interests in samples by virtue of the personal data they contain. In relation to this observation, this article puts forward three arguments. First: The current European legislative framework relating to samples is inadequate. This inadequacy results from not understanding samples in terms of the information they contain. Second: European data protection law, in particular as outlined in the forthcoming Data Protection Regulation, might be looked as a source of solutions. However, whether data protection law can apply to samples at all remains a subject of debate. One key argument supports the position that it cannot: Samples are not data, but rather are physical mater, and therefore can only a source of data. Third: The assertion that ‘samples are not data, but rather only physical matter’ is flawed. Samples do contain data – DNA is data. DNA is understood as information both popularly and in the genetic sciences. In fact, even in informatics, DNA can be understood as data.