[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. 792 Introduced in Senate (IS)]
111th CONGRESS
1st Session
S. 792
To amend the Public Health Service Act to improve the National Program
of Cancer Registries by expanding data collection and allowing data
sharing for public health objectives, while preserving the
confidentiality of patients, and for other purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
April 2, 2009
Mr. Sanders introduced the following bill; which was read twice and
referred to the Committee on Health, Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to improve the National Program
of Cancer Registries by expanding data collection and allowing data
sharing for public health objectives, while preserving the
confidentiality of patients, and for other purposes.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Improvement of the National Program
of Cancer Registries Act''.
SEC. 2. FINDINGS AND PURPOSE.
(a) Findings.--Congress finds as follows:
(1) The National Program of Cancer Registries, established
in 1992 by the Cancer Registries Amendment Act (Public Law 102-
515; 106 Stat. 3372), has enabled each of the 50 States to
maintain a functioning cancer registry.
(2) Over the past 15 years, the Centers for Disease Control
and Prevention has enhanced central cancer registries and
helped to establish standards for quality and completeness of
such registries.
(3) The statewide, population-based cancer registries
collect information on cancer incidence and mortality rates,
which may be used for identifying cancer patterns and trends
and for directing cancer control interventions.
(4) The States rely on electronic records, especially
electronic laboratory records, for the majority of data
collection for the cancer registries.
(5) The States do not have adequate resources to access all
of the records of physicians, hospitals, outpatient clinics,
nursing homes, and other agencies providing services to cancer
patients that would assist in identifying characteristics of
each patient and treatment of the cancer.
(6) Laboratories do not systematically collect or record
essential data, including information on the occupation,
socioeconomic status, or treatments of, or environmental
factors affecting, cancer patients, and thus cancer registries,
which depend in part upon records of laboratories, do not have
essential data that would help determine causes or contributory
causes of cancers.
(7) The National Program of Cancer Registries has
established standards for collecting information but has not
established standards that allow data exchange with other
disease registries.
(8) Information collected by cancer registries must be
exchanged with other disease registries in a confidential and
secure manner in order to prevent information about patients
from being used for purposes other than medical treatment,
medical research, or public health.
(b) Purpose.--The purpose of this Act is to improve the National
Program of Cancer Registries by expanding the data elements collected,
enhancing the quality of information collected, and collecting data
such that the National Program of Cancer Registries preserves the
confidentiality of patients while allowing data sharing for public
health objectives.
SEC. 3. AMENDMENTS TO THE NATIONAL PROGRAM OF CANCER REGISTRIES.
(a) Enhancing Data Collection.--Section 399B(a)(1) of title III of
the Public Health Service Act (42 U.S.C. 280e(a)(1)) is amended--
(1) in the matter preceding subparagraph (A), by striking
``registries to collect, for each condition specified in
paragraph (2)(A), data concerning'', and inserting ``cancer
registries in order to collect, for each form of in-situ and
invasive cancer (with the exception of basal cell and squamous
cell carcinoma of the skin), data in a standardized manner
concerning'';
(2) by striking subparagraph (B) and inserting the
following:
``(B) information on the industrial or occupational
history of adult individuals with the cancers, using
the Federal Standard Occupational Classification
system;'';
(3) in subparagraph (D), by striking ``and'' after the
semicolon;
(4) by inserting after subparagraph (D) the following:
``(E) the highest level of education attained by
adult individuals with the cancers;
``(F) sources of payment by individuals with cancer
for costs associated with cancer diagnosis and
treatment;
``(G) history of alcohol and tobacco use by
individuals with cancer; and''; and
(5) by redesignating subparagraph (E) as subparagraph (H).
(b) Establishing Data Collection Standards.--Section 399B of title
III of the Public Health Service Act (42 U.S.C. 280e) is amended by
inserting at the end the following:
``(f) Data Collection Standards.--
``(1) In general.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall--
``(A) develop standards for collection of each data
element for the State cancer registries assisted under
this section;
``(B) develop inter-operability and security
standards for data exchange and integration between--
``(i) the cancer registries of 2 or more
States; and
``(ii) any cancer registry and another
Federal registry for non-cancer diseases that
contains data concerning individual patients;
and
``(C) provide a basic electronic collection tool,
to facilitate standardized data collection, available
to each State to use for cancer registries.
``(2) Assurances.--Each applicant, prior to receiving
Federal funds under the Improvement of the National Program of
Cancer Registries Act, shall provide assurances satisfactory to
the Secretary that the applicant will comply with standards
developed under paragraph (1).
``(3) Coordination with other federal programs.--To promote
the greatest possible efficiency and effectiveness in the
collection of data for federally-supported cancer registries,
the Secretary shall facilitate appropriate coordination of the
National Program of Cancer Registries under this part with
other federally-supported registry programs, including
infectious disease registries, environmental disease
registries, and other non-cancer, chronic disease
registries.''.
SEC. 4. AUTHORIZATION.
To carry out this Act, there are authorized to be appropriated
$100,000,000 for each of the fiscal years 2010, 2011, 2012, and 2013.
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