NCI > Resources for Scientists > Announcements > Confidentiality Workshop Intro:
CONFIDENTIALITY, DATA SECURITY, AND CANCER RESEARCH
REPORT OF A WORKSHOP
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:
Full Report of the Workshop