Weaving Technology and Policy Together to Maintain Confidentiality

Journal of Law, Medicine and Ethics

Volumn 25, Issue 2-3, 1997, Pages 98-110

  Sweeney, Latanya ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

COMPUTER SECURITY; CONFIDENTIALITY; DATA BASE; HUMAN; INFORMATION DISSEMINATION; INFORMATION RETRIEVAL; INTERPERSONAL COMMUNICATION; LEGAL ASPECT; MEDICAL RECORD; METHODOLOGY; PROFESSIONAL PATIENT RELATIONSHIP; RESEARCH; REVIEW; UNITED STATES;

PROFESSIONAL PATIENT RELATIONSHIP;

COMPUTER SECURITY; CONFIDENTIALITY; DATABASE MANAGEMENT SYSTEMS; DISCLOSURE; HUMANS; INFORMATION DISSEMINATION; INFORMATION STORAGE AND RETRIEVAL; MEDICAL RECORD LINKAGE; MEDICAL RECORDS SYSTEMS, COMPUTERIZED; RESEARCH; UNITED STATES;

EID: 0031150446     PISSN: 10731105     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1748-720X.1997.tb01885.x     Document Type: Article

References (38)

1. I. Kohane et al., "Sharing Electronic Medical Records Across Heterogeneous and Competing Institutions," in J. Cimino, ed., Proceedings, American Medical Informatics Association (Washington, D.C.: Hanley & Belfus, 1996): 608-12.
2. Office of Technology Assessment, Protecting Privacy in Computerized Medical Information (Washington, D.C.: U.S. Government Printing Office, 1993).
3. See L.O. Gostin et al., "Privacy and Security of Personal Information in a New Health Care System," JAMA, 270 (1993): at 2487 (citing Louis Harris and Associates, The Equifax Report on Consumers in the Information Age (Atlanta: Equifax, 1993)).
4. See L.O. Gostin et al., "Privacy and Security of Personal Information in a New Health Care System," JAMA, 270 (1993): at 2487 (citing Louis Harris and Associates, The Equifax Report on Consumers in the Information Age (Atlanta: Equifax, 1993)).
5. Louis Harris and Associates, The Equifax-Harris Consumer Privacy Survey (Atlanta: Equifax, 1994).
6. G. Cooper et al., "An Evaluation of Machine-Learning Methods for Predicting Pneumonia Mortality," Artificial Intelligence in Medicine, 9, no. 2 (1997): 107-38.
7. See Kohane et al., supra note 1.
8. B. Woodward, "Patient Privacy in a Computerized World," 1997 Medical and Health Annual (Chicago: Encyclopedia Britannica, 1996): 256-59.
9. National Association of Health Data Organizations, A Guide to State-Level Ambulatory Care Data Collection Activities (Falls Church: National Association of Health Data Organizations, Oct. 1996).
10. P. Clayton et al., National Research Council, For the Record: Protecting Electronic Health Information (Washington, D.C.: National Academy Press, 1997).
11. See, for example, Donna E. Shalala, Address at the National Press Club, Washington, D.C. (July 31, 1997).
12. B. Woodward, "The Computer-Based Patient Record and Confidentiality," N. Engl. J. Med., 333 (1995): 1419-22.
13. D. Linowes and R. Spencer, "Privacy: The Workplace Issue of the '90s," John Marshall Law Review, 23 (1990): 591-620.
14. D. Grady, "Hospital Files as Open Book," New York Times, Mar. 12, 1997, at C8.
15. See Clayton et al., supra note 9.
16. "Who's Reading Your Medical Records," Consumer Reports, Oct. (1994): 628-32.
17. L. Alexander and T. Jabine, Social Security Bulletin: Access to Social Security Microdata Files for Research and Statistical Purposes, 41, no. 8 (1978).
18. L. Sweeney, "Replacing Personally-Identifying Information in Medical Records, the Scrub System," in Cimino, supra note 1, at 333-37.
19. I. Kohane, "Getting the Data In: Three-Year Experience with a Pediatric Electronic Medical Record System," in J. Ozbolt, ed., Proceedings, Symposium on Computer Applications in Medical Care (Washington, D.C.: Hanley & Belfus, 1994): 457-61.
20. G. Barnett, "The Application of Computer-Based Medical-Record Systems in Ambulatory Practice," N. Engl. J. Med., 310 (1984): 1643-50.
21. Anon., Privacy & Confidentiality: Is It a Privilege of the Past?, Remarks at the Massachusetts Medical Society's Annual Meeting, Boston, Mass. (May, 18, 1997).
22. Government Accounting Office, Fraud and Abuse in Medicare and Medicaid: Stronger Enforcement and Better Management Could Save Billions (Washington, D.C.: Government Accounting Office, HRD-96-320, June 27, 1996).
23. See Sweeney, supra note 17.
24. See id.
25. See National Association of Health Data Organizations, supra note 8.
26. See L. Sweeney, "Computational Disclosure Control for Medical Microdata, the Datafly System," Proceedings of the Bureau of the Census Record Linkage Workshop (Washington, D.C.: Bureau of the Census, 1997): forthcoming.
27. For guidelines, see L. Sweeney "Guaranteeing Anonymity When Sharing Medical Data, the Datafly System," Proceedings, American Medical Informatics Association (Nashville: Hanley & Belfus, 1997): forthcoming.
28. See id.
29. M. Lasalandra, "Panel Told Releases of Med Records Hurt Privacy," Boston Herald, Mar. 20, 1997, at 35.
30. A. Hundepool and L. Willenborg, "mu- and tau-Argus: Software for Statistical Disclosure Control," Third International Seminar on Statistical Confidentiality (1996) (available at 〈http:/ /www.cbs.nl/sdc/argus1.html〉.
31. For a presentation of the concepts on which μ-Argus is based, see L. Willenborg and T. De Waal, Statistical Disclosure Control in Practice (New York: Springer-Verlag, 1996).
32. N. Kirkendall et al., Report on Statistical Disclosure Limitation Methodology, Statistical Policy Working Paper (Washington, D.C.: Office of Management and Budget, no. 22, 1994).
33. For a more in-depth discussion, see Sweeney supra note 26.
34. L. Sweeney, "Towards the Optimal Suppression of Details When Disclosing Medical Data, the Use of Sub-Combination Analysis," Proceedings of the 9th World Conference on Medical Informatics (1998): forthcoming.
35. See Kirkendall et al., supra note 31.
36. G. Duncan and D. Lambert, "The Risk of Disclosure for Microdata," Proceedings of the Bureau of the Census Third Annual Research Conference (Washington, D.C.: Bureau of the Census, 1987): 263-74.
37. C. Skinner and D. Holmes, "Modeling Population Uniqueness," Proceedings of the International Seminar on Statistical Confidentiality (Dublin: International Statistical Institute, 1992): 175-99.
38. For example, Latanya Sweeney's testimony before the Massachusetts Health Care Committee had a chilling effect on the proceedings that postulated that the release of deidentified medical records provided anonymity. See Session of the Joint Committee on Health Care, Massachusetts State Legislature, (Mar. 19, 1997) (testimony of Latanya Sweeney, computer scientist, Massachusetts Institute of Technology). Though the Bureau of the Census has always been concerned with the anonymity of public use files, they began new experiments to measure uniqueness in the population as it relates to public use files. Computer scientists who specialize in data base security are reexamining access models in light of these works.