Privacy and Health Research. Proposed New Medical Privacy Laws


Several Federal bills governing medical privacy, or fair health information practices, have been proposed in the past few years. The previous Congress considered a broad "Medical Records Confidentiality Act of 1996" (Senate Bill 1360, proposed by Senator Robert Bennett, Republican from Utah); a "Medical Privacy in the Age of New Technologies Act of 1996" (House of Representatives Bill 3482, by Congressman Jim McDermott, Democrat from Washington); and a "Fair Health Information Practices Act of 1997" (House of Representatives Bill 52, by Congressman Gary Condit, Democrat from California).

Each of these Bills has distinctive features, but generally they seek to establish uniform national rules on the collection and protection of personally identifiable health data, no matter where they are held; affirm rights of data-subjects; set criteria and procedures for disclosure, fair use, and security; focus responsibilities for ensuring proper protection and use; and establish penalties for wrongful use of data.

In addition, versions of a genetic confidentiality act are being proposed. A prominent one is the "Genetic Confidentiality and Nondiscrimination Act of 1996" (Senate Bill 1898, co-sponsored by Senators Pete Domenici, Republican from New Mexico, and James Jeffords, Republican from Vermont). (Genetic issues are discussed on pages 74–76).

The negotiations over these Bills in the current Congress are moving quickly, and this Report cannot comment on the legislative fray. But it must remark that a broad medical privacy law would foster nationwide uniformity of practices, provide guidance over private-sector data, and be relevant for "adequacy of protection" determinations regarding international transfers of data. Genetic data should be covered firmly by an omnibus medical privacy law, with special genetic provisions stipulated if necessary, but because genetic factors are so thoroughly integrated with other health factors, a separate law on genetic privacy is not desirable, nor would one be on any other particular health condition or disease.