Should Privacy Be Abolished in Genetics and Biobanking?

  • Amedeo SantosuossoEmail author


In this paper, after a short outline of current main features of biobanking, first the disenchantment on privacy and informed consent in the field is presented and discussed as a reaction to the recognition of full (individual) rights even to each piece of biological materials and/or genetic information. Secondly, the real interests at stake (when biological materials and genetic information are involved) are clarified: is human genome really/exclusively human? What are the boundaries of human family and those of biological group? What does biological group encompass in scientific terms and legal terms? Under what conditions and to what extent does the individual compass interact with those of other family members and with the biological group as a whole? Finally, both the human individual and the biological group compass are conceptualized as legal artefacts, whose definitions are the responsibility of lawmakers and individuals and not of scientists, even if lawmakers and individuals should act being fully aware of the latest scientific findings and views.


Family Health History Biological Group Informational Privacy Human Family Research Biobanks 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


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© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  1. 1.Interdepartmental Research Centre, European Centre for Law, Science and New Technologies (ECLT)University of PaviaPaviaItaly

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