Today, society is witnessing tremendous changes in both the collection and use of health information and in the environment in which it resides. The transition from fee-for-service health care to managed care has led to a demand for an unprecedented depth and breadth of personal information by a growing number of players. At the same time, the environment for information is moving rapidly from paper forms and files to electronic media, giving organizations a greater ability to tie formerly distinct information together and send it easily through different sources.

In 1999-2000, Congress considered but ultimately failed to adopt medical privacy rules, either by amending the Health Insurance Portability and Accountability Act of 1996 or creating new legislation altogether. Congress failed to meet its self-imposed August 21, 1999 deadline for enacting comprehensive health privacy rules.

As a response, the Clinton administration issued the first set of federal privacy rules to protect medical informationin December 2000, requiring consumer consent before companies share medical data or detailed information about consumer spending habits. The rules also require companies to disclose their privacy policies prior to engaging in data transactions with users. See White House documents posted below. For complete information, go to the Georgetown University Health Privacy Project.

• White House Press Release, December 20, 2000
• President Clinton's remarks, December 20, 2000
• White House Executive Order, December 20, 2000
• Health and Human Services (HHS) Press Release, December 20, 2000
• HHS Rule Text, December 20, 2000
• Georgetown Health Privacy Project Statement, December 20, 2000

• Policy Post 2.30, New Electronic Health Info ..., August 16, 1996
• Policy Post 2.14, Key Senators Strengthen Medical Privacy Bill, April 12, 1996
• Policy Post 2.11. CDT Proposes Changes to Improve Med-Privacy Bill, March 19, 1996
• Policy Post No.27, October 24, 1995
• Policy Post No. 21, July 6, 1995

• Clinton-Gore initiative [ .html ] [ WordPerfect ], Federal privacy rules to protect medical information, October 29, 1999
• Response from Companies, February 26, 1998
• Web Site Collecting Sensitive Health Information Responds, February 26, 1998
• CDT Complaint to FTC Regarding Medical Web Sites Data Collection Practices, December 2, 1997
• National Research Council (NRC) Report For the Record: Protecting Electronic Health Information, available for purchase from the National Academy, March 5, 1997
• NCVHS Confidentiality Hearing Witness List for February 18-19, 1997
• Federal Register Notice About the National Committee on Vital and Health Statistics (NCVHS) Subcommittee on Privacy and Confidentiality Meetings, December 23, 1996
• Goldman Testimony, June 14, 1996
• CDT Lettter in Support of S. 1360, April 29, 1996
• Statement of Janlori Goldman, on S. 1360, November 14, 1995
• Summary of The Medical Records Confidentiality Act of 1995
• Section-by-Section Analysis of The Medical Records Confidentiality Act of 1995

• CDT Resource Library
  
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