Advertisement

Should Privacy Be Abolished in Genetics and Biobanking?

  • Amedeo SantosuossoEmail author
Chapter
  • 843 Downloads

Abstract

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.

Keywords

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.

References

  1. Article 29 Data Protection Working Party (2004) Working document on genetic data. http://ec.europa.eu/justice_home/fsj/privacy/docs/wpdocs/2004/wp91_en.pdf. Accessed 30 Oct 2010
  2. Article 29 Data Protection Working Party on Police and Justice (2009) The future of privacy, joint contribution to the consultation of the European Commission on the legal framework for the fundamental right to protection of personal dataGoogle Scholar
  3. Cambon-Thomsen A et al (2007) Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J 30:373–382CrossRefGoogle Scholar
  4. De S, Teichmann SA, Babu MM (2009) The impact of genomic neighborhood on the evolution of human and chimpanzee transcriptome. Genome Res 19(5):785–794CrossRefGoogle Scholar
  5. Elger BS, Caplan AL (2006) Consent and anonymization in research involving biobanks. Differing terms and norms present serious barriers to an international framework. EMBO Rep 7(7). http://www.nature.com/embor/journal/v7/n7/full/7400740.html
  6. European Commission (July 2010) DG Justice, Freedom and Security, Prepared by London School of Economics. At http://ec.europa.eu/justice/policies/privacy/docs/studies/final_report_pets_16_07_10_en.pdf
  7. Galton F (1869) Hereditary genius. Macmillan, New YorkGoogle Scholar
  8. Garner B (1990) Black’s law dictionary, 6th edn. West Group, BostonGoogle Scholar
  9. Gaskell G, et al (2010) Europeans and biotechnology in 2010. Winds of change? A report to the European Commission’s Directorate-General for Research, October 2010. http://ec.europa.eu/research/science-society/document_library/pdf_06/europeans-biotechnology-in-2010_en.pdf
  10. German Ethics Council (2010) Humanbiobanken für die Forschung [Human biobanks for research opinion]. http://www.ethikrat.org/search?SearchableText=%E2%80%9CHuman+Biobanks+for+Research%E2%80%9D. Accessed 29 Oct 2010
  11. Harris J (2009) Taking the “human” out of human rights and the “dignity” out of human dignity and putting the science back. http://www.freedomofresearch.org/article/2009-11-19/document/documents/j-harris-taking-human-out-human-rights-and-dignity-out-human-d. Accessed 5 Mar 2012
  12. Italian National Bioethics Committee (2006) Biobanks and research on human biological materialGoogle Scholar
  13. Kelsen H (1945) General theory of law and state. Harvard University Press, HarvardGoogle Scholar
  14. Knoppers BM, Saginur M (2005) The Babel of genetic data terminology. Nat Biotechnol 23(8):925–929CrossRefGoogle Scholar
  15. Loft S, Poulsen HE (1996) Cancer risk and oxidative DNA damage in man. J Mol Med 74:297–312CrossRefGoogle Scholar
  16. Lunshof JE, Chadwick R, Vorhaus DB, Church GM (2008) From genetic privacy to open consent. Nat Rev Genet 9:406–411CrossRefGoogle Scholar
  17. Macilotti M (2008) Proprietà, informazione ed interessi nella disciplina delle biobanche a fini di ricerca, NGCC II:222-235Google Scholar
  18. Mill JS (1859) On liberty. J.W. Parker and Son, LondonGoogle Scholar
  19. Nationaler Ethikrat (2004) Biobanks for research. http://www.ethikrat.org/press/press-releases/2010/press-release-05-2010. Accessed 29 Oct 2010
  20. OECD (2009) Recommendation on human biobanks and genetic research databases (HBGRD). http://www.biotechinbrussels.be/
  21. Saniotis A (2007) ‘Recombinant nature’: transgenics and the emergence of hum-animals. E-Logos Electron J Philos. http://nb.vse.cz/kfil/elogos/biocosmology/saniot07b.pdf. Accessed 29 Oct 2010
  22. Santosuosso A, Bottalico B (2009) Neuroscience, accountability and individual boundaries. Front Hum Neurosci 3:45, www.frontiersin.org/humanneuroscience/paper/10.3389/neuro…/045.2009/. Accessed 29 Oct 2010
  23. Santosuosso A, Sellaroli V, Pavone I (2007) Drawing the boundary lines of humans: in whose Bailiwick? Derecho y Religión II:11–36Google Scholar
  24. Scaffardi L (2008) Legal protection and ethical management of genetic databases: challenges of the European process of harmonization. Jean Monnet working paper 19/08. http://www.astrid-online.it/Documenti/Privacy/estratto-scaffardi-new-york.pdf. Accessed 30 Oct 2010
  25. Singer N (30 April 2010) Shoppers who can’t have secrets. NYTGoogle Scholar
  26. Swedish Kommittédirektiv (2008) Översyn av lagen (2002:297) om biobanker i hälso- och sjukvården m.m. http://www.sou.gov.se/kommittedirektiv/2008/dir2008_71.pdf. Accessed 30 Oct 2010
  27. Società Italiana di Genetica Umana (2004) Linee guida per l’attività di genetica medica. http://www.sigu.net/index.php?option=com_docman&task=cat_view&gid=46&Itemid=78&limitstart=5. Accessed 22 Nov 2010
  28. UK Biobank (2005) Policy on intellectual property (“IP”) and access, draft. http://www.ukbiobank.ac.uk/. Accessed 29 Oct 2010
  29. UK Biobank (2007) Ethics and governance framework version 3.0. http://www.ukbiobank.ac.uk/ethics/intro.php. Accessed 29 Oct 2010
  30. Warren SD, Brandeis LD (1890) The right to privacy. Harv Law Rev IV(5)Google Scholar
  31. Zika E, Paci D, Schulte T, Braun A, RijKers-Defrasne A, Deschênes M, Fortier I, Laage-Hellman J, Scerri C A, Ibarreta D (2010) Biobanks in Europe: prospects for harmonisation and networking. http://ftp.jrc.es/EURdoc/JRC57831.pdf. Accessed 29 Oct 2010

Copyright information

© 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

Personalised recommendations