NCI > Resources for Scientists > Announcements > Confidentiality Workshop Intro:
CONFIDENTIALITY, DATA SECURITY, AND CANCER RESEARCH REPORT OF A WORKSHOP Bethesda, Maryland December 1-2, 1999
Effective and productive cancer research requires that researchers have access to individually identifiable data. It is a prime responsibility of the research community to make sure that the confidentiality of these data are assured. Recent advances in medical research have been accompanied by equally striking advances in the acquisition, storage, analysis, and communication of data by electronic means. These advances together pose significant challenges to the maintenance of confidentiality of sensitive information about people.
To explore the issues and identify solutions, the National Cancer Institute sponsored a Workshop in Bethesda, Maryland on December 1 and 2, 1999. Experts in several areas crucial to cancer research - population surveillance, clinical trials, tissue resources, genetics, and epidemiology - were joined by consumer advocates and representatives of federal agencies, health plans, and the pharmaceutical industry (see Appendix A). The goals of the meeting were to: 1) raise issues that would inform the debate about privacy, 2) develop recommendations for a series of practices that would insure the confidentiality of identifiable data in research settings without erecting unnecessary obstacles to the conduct of research, and 3) ensure that the research perspective is included in upcoming policy decisions.
This paper summarizes the recommendations from this meeting. We invite comments from the research community, members of institutional review boards (IRBs), health plans and managed-care organizations, policymakers, advocacy groups, and the general public. Please send comments to: confidentiality_ws@pop.nci.nih.gov
Full Report of the Workshop Participant Roster