References to Biomedical Informatics and Privacy

Biomedical Informatics and Privacy
Models, Algorithms and Applications


Biomedical and health data is considered some of the most sensitive information one can collect on an individual. The high profile of such information, privacy protection mandates have been set forth in state and federal laws, such as the Privacy Rule of the Health Insurance Portability and Accountability Act. This setting provides fertile ground for basic research into, as well as applications of, data privacy protection technologies. Additionally, over the past decade, genomics and computational molecular biology has increased the amount of information available regarding genetic information in the form of massive data collections of genomic sequence-related data and their potential correlations with demographic, clinical, and metabolic attributes. Below are some citations to research papers on computational and technological solutions and implementations we consider important. References to bioinformatics and medical informatics are listed separately. (If you have an additional citation you deem essential to this collection, please let us know.)


Selected References (Bioinformatics, genomics, genetic information)

  1. Atallah MJ, Kerschbaum F, and Du W. Secure and Private Sequence Comparisions. In Proceedings of the ACM Workshop on Privacy in Electronic Society, In conjunction with the 10th ACM Conference on Computer and Communications Security. 2003.

  2. Burnett L, Barlow-Stewart K, Pros AL, and Aizenberg H. The “GeneTrustee”: a Universal Identification System that Ensures Privacy and Confidentiality for Human Genetic Databases. Journal of Law and Medicine. 2003; 10(4): 506-513.

  3. de Moor GJ, Claerhout B, de Meyer F. Privacy Enhancing Technologies: the Key to Secure Communication and Management of Clinical and Genomic Data. Methods of Information in Medicine. 2003; 42: 148-153.

  4. Gaudet D, Arsnault S, Belanger C, et. al. Procedure to Protect Confidentiality of Familial Data in Community Genetics and Genomics Research. Clinical Genetics. 1999; 55: 259-264.

  5. Gulcher JR, Kristjansson K, Gudbjartsson H, Stefanson K. Protection of Privacy by Third-Party Encryption in Genetic Research. European Journal of Human Genetics. 2000; 8: 739-742.

  6. Lin Z, Owen AB, and Altman RB. Point of View: Approaches for Protecting Privacy in the Genomic Era. Genetic Engineering News. 2004 Oct.

  7. Lin Z, Owen AB, and Altman RB. Genomic Research and Human Subject Privacy. Science. 2004 Jul 9;305(5681):183.

  8. Lin Z, Hewett M, and Altman RB. Using Binning to Maintain Confidentiality of Medical Data. In Proceedings of the 2002 American Medical Informatics Association Annual Symposium. San Antonio, TX. 2002: 454-8.

  9. Malin B. An Evaluation of the Current State of Genomic Data Privacy Protection Technology and a Roadmap for the Future. Journal of the American Medical Informatics Association. 2005; 12(1): Preprint: doi:10.1197/jamia.M1603.

  10. Malin B and Sweeney L. How (Not) to Protect Genomic Data Privacy in a Distributed Network: Using Trail Re-identification to Evaluate and Design Anonymity Protection Systems. Journal of Biomedical Informatics. 2004; 37(3): 179-192.

  11. Malin B and Sweeney L. Re-identification of DNA Through an Automated Linkage Process. In Proceedings of the American Medical Informatics Association 2001 Annual Symposium. Washington, DC, Nov 2001: 423-7.

  12. Malin B and Sweeney L. Determining the Identifiability of DNA Database Entries. In Proceedings of the American Medical Informatics Association 2000 Annual Symposium. Washington, DC, Nov 2001: 547-551.


Selected References (Medical informatics, health information)

  1. Ateniese G and Medeiros B. Anonymous E-prescriptions. In Proceedings of the Workshop on Privacy in the Electronic Society (WPES02), in conjunction with the ACM Computers and Communications Conference. 2002.

  2. Bui AA, Weinger GS, Barretta SJ, Dionisio JD, and Kangarloo H. An XML Gateway to Patient Data for Medical Research Applications. Annals of the New York Acadamy of Science. 2002 Dec; 980: 236-46.

  3. Chiang YC, Hsu TS, Kuo S, Liau CJ, Wang DW. Preserving Confidentiality When Sharing Medical Database with the Cellsecu System. International Journal of Medical Informatics. 2003 Aug; 71(1): 17-23.

  4. Churches T. A Proposed Architecture and Method of Operation for Improving the Protection of Privacy and Confidentiality in Disease Registers. BMC Medical Research Methodology. 2003; 3(1): 1.

  5. Dreiseitl S, Vinterbo S, Ohno-Machado L. Disambiguation Data: Extracting Information from Anonymized Sources. In Proceedings of the 2001 American Medical Informatics Annual Symposium. 2001: 144-8.

  6. Gupta D, Saul M, Gilbertson J. Evaluation of a Deidentification (De-Id) Software Engine to Share Pathology Reports and Clinical Documents for Research. American Journal of Clinical Pathology. 2004; 121(6): 176-186.

  7. Ohno-Machado L, Silveira PS, Vinterbo S. Protecting Patient Privacy by Quantifiable Control of Disclosures in Disseminated Databases. International Journal of Medical Informatics. 2004 Aug; 73(7-8): 599-606.

  8. Ohno-Machado L, Vinterbo SA, Dreiseitl S. Effects of Data Anonymization by Cell Suppression on Descriptive Statistics and Predictive Modeling Performance. In Proceedings of the 2001 American Medical Informatics Annual Symposium. 2001: 503-7.

  9. Ohrn A, Ohno-Machado L. Using Boolean Reasoning to Anonymize Databases. Artificial Intelligence in Medicine. 1999 Mar; 15(3): 235-54.

  10. Schadow G, Grannis S, McDonald C. Privacy-preserving Distributed Queries for a Clinical Case Research Network. In Proceedings of the International Conference on Privacy, Security, and Data Mining, in conjunction with the 2nd IEEE International Conference on Data Mining. Maebashi City, Japan. 2004.

  11. Sweeney L. Guaranteeing Anonymity when Sharing Medical Data, the Datafly System. In Proceedings of the American Medical Informatics Association 1997 Annual Symposium. 1997.

  12. Sweeney L. Replacing Personally-Identifying Information in Medical Records, the Scrub System. In Proceedings of the American Medical Informatics Association 1996 Annual Symposium. 1996: 333-337.

  13. Sweeney L. Three Computational Systems for Disclosing Medical Data in the Year 1999. In Proceedings of MEDINFO '98. International Medical Informatics Association. Seoul, Korea. 1998.

  14. Wang DW, Liau CJ, Hsu TS. Medical privacy protection based on granular computing. Artificial Intelligence in Medicine. 2004 Oct; 32(2): 137-49.

  15. Wylie JE, Mineau GP. Biomedical Databases: Protecting Privacy and Promoting Research. Trends in Biotechnology. 2003; 21(3): 113-116.

  16. Yang Y, Han X, Bao F, Deng RH. A Smart-Card-Enabled Privacy Preserving E-Prescription System. IEEE Transactions on Information Technologies in Biomedicine. 2004 Mar; 8(1): 47-58.


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This list was compiled in part by Bradley Malin. For additions or changes, please contact us.

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