networks, the slower adoption of products for authenticating users (i.e., public key infrastructure products), public key infrastructure products, and the general tendency of organizations to contract for information technologists rather than develop in-house expertise.

  • The chair of the IRB of the Indian Health Service spoke about ethical issues regarding research with minority groups, including both the privacy of individuals within small and isolated groups and the privacy of the group itself. In either case, he observed, consultation with individuals familiar with the particulars of the group is important to avoid unintentional privacy violations and to build trust between the researchers and the participants.

The committee had commissioned two background papers, in accord with the contract between the IOM and the sponsors, which were presented in draft at the workshop. One paper analyzed issues regarding HSR with children. The author identified three issues of particular concern in considering health services research involving minors, including the heterogeneity of the population in question, complications arising from proxy consent, and the changing interests and risks affecting the subjects as they grow older. The second commissioned paper analyzed international standards regarding the use of personally identifiable health information for HSR. The author studied international conventions and guidelines and the domestic law of several nation states. This analysis pointed out different approaches to requiring oversight of the use of personally identifiable health information in HSR by IRB-like bodies and the uses of such information without individual consent. Both papers are appended to the committee's report, as is this workshop summary.



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