[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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