Cell and Tissue Banking

, Volume 12, Issue 3, pp 233–240 | Cite as

Safeguarding donors’ personal rights and biobank autonomy in biobank networks: the CRIP privacy regime

  • Christina Schröder
  • Karsten R. Heidtke
  • Nikolaus Zacherl
  • Kurt Zatloukal
  • Jochen Taupitz
Original Paper

Abstract

Governance, underlying general ICT (Information and Communication Technology) architecture, and workflow of the Central Research Infrastructure for molecular Pathology (CRIP) are discussed as a model enabling biobank networks to form operational “meta biobanks” whilst respecting the donors’ privacy, biobank autonomy and confidentiality, and the researchers’ needs for appropriate biospecimens and information, as well as confidentiality. Tailored to these needs, CRIP efficiently accelerates and facilitates research with human biospecimens and data.

Keywords

Biobanks Governance Infrastructure Networks Privacy 

Notes

Acknowledgment

We thank Dr. Peter Hecht for stimulating discussions and critical revision of the manuscript. Work described here was supported by grants 01GR0601 and 01GR0701 of the German Ministry for Education and Research (Bundesministerium für Bildung und Forschung, BMBF).

References

  1. Asslaber M, Zatloukal K (2007) Biobanks: transnational, European and global networks. Briefings in Functional Genomics and Proteomics Advance Access published October 4, 2007, pp. 1–9.  10.1093/bfgp/elm023
  2. Berliner Beauftragter für Datenschutz und Informationsfreiheit (Ed., 2006): Jahresbericht 2006, Brandenburgische Universitätsdruckerei und Verlagsgesellschaft Potsdam mbH, Potsdam, p 129. See also: http://www.datenschutz-berlin.de/attachments/140/Jahresbericht_2006.pdf Accessed March 29, 2010
  3. Capron AM, Mauron A, Elger BS, Boggio A, Ganguli-Mitra A, Biller-Adorno N (2009) Ethical norms and the international governance of genetic databases and biobanks: findings from an International study. Kennedy Inst Ethics J 19(2):101PubMedCrossRefGoogle Scholar
  4. Council of Europe (1997) Convetion on Human Rights and Biomedicine. http://conventions.coe.int/Treaty/Commun/QueVoulezVous.asp?NT=&CM=8&DF=1/23/2007&CL=ENG Accessed April 22, 2010
  5. El Emam K, Kamal Dakar F (2008) Protecting privacy using k-anonymity. J Am Med Informatics Association 15:627–637CrossRefGoogle Scholar
  6. European Science Foundation (2008) Science policy briefing: population surveys and biobanking. http://www.esf.org/index.php?eID=tx_ccdamdl_file&p[file]=17582&p[dl]=1&p[pid]=4052&p[site]=%20Science%20Foundation&p[t]=1272376814&hash=d41f243e99a528cd9836c0af194c5e75&l=en Accessed April 20, 2010
  7. Forsberg JS, Hansson MG, Eriksson S (2009) Changing perspectives in biobank research: from individual rights to concerns about public health regarding the return of results. Eur J Hum Genet. doi:  10.1038/ejhg.2009.87
  8. Gottweis H, Lauss G (2010) Biobank governance in the post-genomic age. Per Med 7(2):187–195CrossRefGoogle Scholar
  9. Knoppers BM, Saginur M (2005) The Babel of genetic data terminology. Nature Biotechnol 23:925–927CrossRefGoogle Scholar
  10. Reng CM, Debold P, Specker C, Pommerening K (2006) Generische Lösungen zum Datenschutz für die Forschungsnetze in der Medizin; Medizinisch Wissenschaftliche Verlagsgesellschaft, BerlinGoogle Scholar
  11. Taupitz J (2006) The use of human bodily substances and personal data for research: The German National Ethics Council’s opinion. J Intl Biotechnol Law 3(3):25–32CrossRefGoogle Scholar
  12. Ursin L (2008) Biobank research and the right to privacy. Theor Med Bioeth 29(4):267–285PubMedCrossRefGoogle Scholar
  13. Waltz E (2007) Pricey cancer genome project struggles with sample shortage. Nat Med 13(4):391PubMedCrossRefGoogle Scholar
  14. Yuille M, van Ommen GJ, Bréchot C, Cambon-Thomsen A, Dagher G, Landegren U, Litton JE, Pasterk M, Peltonen L, Taussig M, Wichmann HE, Zatloukal K (2008) Biobanking for Europe. Brief Bioinform 9(1):14–24PubMedCrossRefGoogle Scholar
  15. Yuille M, Dixon K, Platt A, Pullum A, Lewis D, Hall A, Ollier W (2009) The UK DNA banking network: a “fair access” biobank. Cell Tissue Bank doi:  10.1007/s10561-009-9150-3

Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Christina Schröder
    • 1
  • Karsten R. Heidtke
    • 1
  • Nikolaus Zacherl
    • 2
  • Kurt Zatloukal
    • 3
  • Jochen Taupitz
    • 4
  1. 1.Fraunhofer Institut für Biomedizinische Technik (IBMT)Potsdam-GolmGermany
  2. 2.IMG Institut für medizinische Genomforschung Planungsgesellschaft mbHViennaAustria
  3. 3.Institut für PathologieMedizinische Universität GrazGrazAustria
  4. 4.Institut für MedizinrechtUniversität Mannheim, SchlossMannheimGermany

Personalised recommendations