Page 233

2. One of the primary benefits that could be lost because of concerns over privacy and security is the capability to compile comprehensive health records of individual patients from a number of different sites at which they were treated. At present, personal health information usually resides at the health care provider organization. For many people, there is no comprehensive health record that merges information from numerous care sites, a gap that can compromise the quality of care received subsequently. Such longitudinal records also would have value in public health and health services research.

3. The text of the proposed regulations, as well as a summary of their contents, is available online at <http://aspe.hhs.gov/admnsimp/>.

4. For additional information on the privacy implications of universal health identifiers and standards-setting activities in this area, see Appavu (1997), CSTB (1997), and National Committee on Vital and Health Statistics (1999).

5. The full title of the directive is Directive 96/9/EC of the European Parliament and of the Council of 11 March 1996 on the Legal Protection of Databases, 1996 O.J. (L77) 20. The full text of the directive is available in NRC (1999), Appendix D.

6. See <http://www.epic.org>; main news feature (accessed May 5, 1999). For information on the safe harbor proposal, see <http://www.ita.doc.gov/media/419data.htm>.

7. This gap has been characterized as a "digital divide" between "information haves" and "information have-nots." See NTIA (1999).

8. The Computer Science and Telecommunications Board (CSTB) of the National Research Council has a project under way to examine technology, business, and policy issues affecting the deployment of broadband technologies for the so-called "last mile" to the home. Additional project information is available online at <http://www.cstb.org> and at <http://www.nationalacademies.org,> under the heading "Current Projects."

9. The 1996 act was the first to codify the notion of universal service (Mueller, 1997).

10. The NLM grants cover gateway and associated connection hardware; internal access equipment, such as personal computers and local area network costs, are expected to be provided by the institution(s). In 1999, seven awards were made for $232,000. The NLM also has awarded approximately $6.7 million to nonprofit health centers since 1996 for telemedicine and Next Generation Internet projects. Additional information on NLM's infrastructure programs is available online at <http://www.nlm.nih.gov/ep/connect.html,> <http://www.nlm.nih.gov/research/telemedinit.html,> and <http://www.nlm.nih.gov/research/ngiinit.html.>

11. For information on Xerox's rights management technology, see Gotcher (1999). Information on Intertrust's products is available at <http://www.intertrust.com>.

12. Information on this announcement is available online at <http://www.nih.gov/welcome/director/pubmedcentral/pubmedcentral.htm>.

13. The DMCA brings the United States into closer compliance with the World Intellectual Property Organization (WIPO) treaty. It has numerous provisions. First, it assigns liability to online service providers for acts of subscribers who infringe on the intellectual property rights of others. Universities, some of which have medical schools, are determining how best to comply with the act in a way that enables them to qualify for liability limitations. Second, the DMCA outlaws the circumvention of technical protection systems. Exceptions to the act are permitted for educational fair use, reverse engineering to support interoperability, protection of personal privacy, and security testing. Third, the DMCA required the U.S. Copyright Office to determine whether any adverse effects on fair use had been observed after a 2-year moratorium.

14. See U.S. Copyright Office (1999), available online at <http://lcweb.loc.gov/copyright/cpypub/de_rprt.pdf>.

15. Concerns regarding the possible effect of the EU Directive on scientific research are discussed in a 1999 report from the National Research Council. See NRC (1999).break



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement