0920-0573 - HIV Incidence Surveillance Data Elements and Procedures

Attachment L. Assurance of Confidentiality for HIV/AIDS Surveillance

ASSURANCE OF CONFIDENTIALITY FOR SURVEILLANCE OF ACQUIRED
IMMUNODEFICIENCY SYNDROME (AIDS) AND INFECTION WITH HUMAN
IMMUNODEFICIENCY VIRUS (HIV) AND SURVEILLANCE-RELATED DATA
(INCLUDING SURVEILLANCE INFORMATION, CASE INVESTIGATIONS AND
SUPPLEMENTAL SURVEILLANCE PROJECTS, RESEARCH ACTIVITIES, AND
EVALUATIONS)
The national surveillance program for HIV/AIDS is being coordinated by the HIV Incidence
and Case Surveillance Branch (HICSB) and the Behavioral and Clinical Surveillance
Branch (BCSB) of the Division of HIV/AIDS Prevention - Surveillance and
Epidemiology (DHAP - SE), the National Center for HIV/STD/TB Prevention, a
component of the Centers for Disease Control and Prevention (CDC), an agency of the
United States Department of Health and Human Services. The surveillance information
requested by CDC consists of reports of persons with suspected or confirmed AIDS or
HIV infection, including children born to mothers infected with HIV, and reports of
persons enrolled in studies designed to evaluate the surveillance program. The
information collected by CDC is abstracted from laboratory, clinical, and other medical
or public health records of suspected or confirmed HIV/AIDS cases; and from surveys
that interview persons in recognized HIV risk groups or known to have a diagnosis of
HIV/AIDS.
Surveillance data collection is conducted by State and Territorial health departments which
forward information to CDC after deleting patient and physician names and other
identifying or locating information. Records maintained by CDC are identified by
computer-generated codes, patient date of birth, and a state/city assigned patient
identification number. The data are used for statistical summaries and research by CDC
scientists and cooperating state and local health officials to understand and control the
spread of HIV/AIDS. In rare instances, expert CDC staff, at the invitation of state or
local health departments, may participate in research or case investigations of unusual
transmission circumstances or cases of potential threat to the public health. In these
instances, CDC staff may collect and maintain information that could directly identify
individuals.
Information collected by CDC under Section 306 of the Public Health Service Act (42 U.S.C.
242k) as part of the HIV/AIDS surveillance system that would permit direct or indirect
identification of any individual or institution on whom a record is maintained, and any
identifiable information collected during the course of an investigation on either persons
supplying the information or persons described in it, is collected with a guarantee that it
will be held in confidence, will be used only for the purposes stated in this Assurance,
and will not otherwise be disclosed or released without the consent of the individual or
institution in accordance with Section 308 (d) of the Public Health Service Act (42
U.S.C. 242m(d)). This protection lasts forever, even after death.

Information that could be used to identify any individual or institution on whom a record is
maintained by CDC will be kept confidential. Full names, addresses, social security
numbers, and telephone numbers will not be reported to this national HIV/AIDS
surveillance system. Medical, personal, and lifestyle information about the individual,
and a computer-generated patient code will be collected.
Surveillance information reported to CDC will be used without identifiers primarily for
statistical and analytic summaries and for evaluations of the surveillance program in
which no individual or institution on whom a record is maintained can be identified, and
secondarily, for special research investigations of the characteristics of populations
suspected or confirmed to be at increased risk for infection with HIV and of the natural
history and epidemiology of HIV/AIDS. When necessary for confirming surveillance
information or in the interest of public health and disease prevention, CDC may confirm
information contained in case reports or may notify other medical personnel or health
officials of such information; in each instance, only the minimum information necessary
will be disclosed.
No CDC HIV/AIDS surveillance or research information that could be used to identify any
individual or institution on whom a record is maintained, either directly or indirectly,
will be made available to anyone for non-public health purposes. In particular, such
information will not be disclosed to the public; to family members; to parties involved in
civil, criminal, or administrative litigation, or for commercial purposes; to agencies of the
federal, state, or local government. Data will only be released to the public, to other
components of CDC, or to agencies of the federal, state, or local government for public
health purposes in accordance with the policies for data release established by the
Council of State and Territorial Epidemiologists.
Information in this surveillance system will be kept confidential. Only authorized employees
of DHAP - SE in HICSB, BCSB, and in the Statistics and Data Management Branch
(SDMB), their contractors, guest researchers, fellows, visiting scientists, research interns
and graduate students who participate in activities jointly approved by CDC and the
sponsoring academic institution, and the like, will have access to the information.
Authorized individuals are required to handle the information in accordance with
procedures outlined in the Confidentiality Security Statement for Surveillance of
Acquired Immunodeficiency Syndrome (AIDS) and Infection with Human
Immunodeficiency Virus (HIV) and Surveillance-Related Data (Including Surveillance
Information, Case Investigations and Supplemental Surveillance Projects, Research
Activities, and Evaluations.