Final Att-8a Assurance of Conf

Attachment 8 (a)
National HIV Surveillance System (NHSS)
OMB # 0920-0573

Assurance of Confidentiality for HIV/AIDS Surveillance

26 October 2012

1

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 (DHAP), the
National Center for HIV, Viral Hepatitis, STD and TB Prevention, within the
Coordinating Center for Infectious Diseases (CCID) 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 304 and 306 of the Public Health Service
Act (42 U.S.C. 242b and 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 other components of CDC, or to agencies of the
federal, state, or local government, or to select members of the public 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 in HICSB, BCSB, and in the Quantitative Sciences and Data
Management Branch (QSDMB), their contractors, guest researchers, fellows,
visiting scientists, authorized external collaborating researchers, 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).