Methods Inf Med 2003; 42(02): 148-153
DOI: 10.1055/s-0038-1634326
Original article
Schattauer GmbH

Privacy Enhancing Techniques

The Key to Secure Communication and Management of Clinical and Genomic Data
G. J. E. De Moor
1   Department of Medical Informatics and Statistics, University Hospital Gent, Gent, Belgium
B. Claerhout
2   RAMIT vzw, Merelbeke, Belgium
F. De Meyer
3   CUSTODIX nv, Merelbeke, Belgium
› Author Affiliations
Further Information

Publication History

Publication Date:
08 February 2018 (online)


Objectives: To introduce some of the privacy protection problems related to genomics based medicine and to highlight the relevance of Trusted Third Parties (TTPs) and of Privacy Enhancing Techniques (PETs) in the restricted context of clinical research and statistics.

Methods: Practical approaches based on two different pseudonymisation models, both for batch and interactive data collection and exchange, are described and analysed.

Results and Conclusions: The growing need of managing both clinical and genetic data raises important legal and ethical challenges. Protecting human rights in the realm of privacy, while optimising research potential and other statistical activities is a challenge that can easily be overcome with the assistance of a trust service provider offering advanced privacy enabling/enhancing solutions. As such, the use of pseudonymisation and other innovative Privacy Enhancing Techniques can unlock valuable data sources.

  • References

  • 1 Goodman KW. Ethics, Genomics, and Information Retrieval. Comput Biol Med 1996; vol 26, no. 3: 223-9.
  • 2 Martin-Sanchez F. Integrating Genomics into Health Information Systems. In: Methods Inf Med 2002; 41: 25-30.
  • 3 Fedder RS. To Know or Not to Know. Legal Perspectives on Genetic Privacy and Disclosure of an Individual’s Genetic Profile. The Journal of Legal Medicine 21: 557-92.
  • 4 Mehlman MJ. The effect of Genomics on Health Services Management: Ethical and Legal Perspectives. Frontiers of Health Services Management; 17 37: 17-26.
  • 5 McConnell LM, Koenig BA, Greely HT, Raffin TA. Genetic Testing and Alzheimer Disease: Recommendations of the Stanford Program in Genomics, Ethics, and Society. Genetic Testing 1993; vol. 3, nr 1: 3-12.
  • 6 European Directive 95/46 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.
  • 7 Dobbertin H, Bosselaers A, Preneel B. RIPEMD-160: a strengthened version of RIPEMD, Fast Software Encryption, LNCS. Vol. 1039 71-82.
  • 8 Brands SA. Rethinking Public Key Infrastructures and Digital Certificates: Building in Privacy. Library of Congress Cataloging-in-Publication Data. ISBN 0-262-2491-8.