    [United States Statutes at Large, Volume 132, 115th Congress, 2nd Session]
    [From the U.S. Government Publishing Office, www.gpo.gov]

    Public Law 115-194
    115th Congress

    An Act

    To require the Secretary of Health and Human Services to develop a
    voluntary registry to collect data on cancer incidence among
    firefighters. <>

    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 Firefighter Cancer Registry Act of
    2018.
    SEC. 2. <>  VOLUNTARY REGISTRY FOR
    FIREFIGHTER CANCER INCIDENCE.

    (a) <>  In General.--The
    Secretary of Health and Human Services (referred to in this section as
    the Secretary), acting through the Director of the Centers for Disease
    Control and Prevention and in coordination with other agencies as the
    Secretary determines appropriate, shall develop and maintain, directly
    or through a grant or cooperative agreement, a voluntary registry of
    firefighters (referred to in this section as the Firefighter Registry)
    to collect relevant health and occupational information of such
    firefighters for purposes of determining cancer incidence.

    (b) Use of Firefighter Registry.--The Firefighter Registry may be
    used for the following purposes:
    (1) To improve data collection and data coordination
    activities related to the nationwide monitoring of the incidence
    of cancer among firefighters.
    (2) To collect, consolidate, and maintain, consistent with
    subsection (g), epidemiological information and analyses related
    to cancer incidence and trends among firefighters

    (c) Relevant Data.--
    (1) Data collection.--In carrying out the voluntary data
    collection for purposes of inclusion under the Firefighter
    Registry, the Secretary may collect the following:
    (A) <>  Information, as
    determined by the Secretary under subsection (d)(1), of
    volunteer, paid-on-call, and career firefighters,
    independent of cancer status or diagnosis.
    (B) Individual risk factors and occupational history
    of firefighters.
    (C) Information, if available, related to--
    (i) basic demographic information, including--
    (I) the age of the firefighter
    involved during the relevant dates of
    occupation as a firefighter; and
    (II) the age of cancer diagnosis;

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    (ii) the status of the firefighter as either
    volunteer, paid-on-call, or career firefighter;
    (iii) the total number of years of occupation
    as a firefighter and a detailing of additional
    employment experience, whether concurrent, before,
    or anytime thereafter;
    (iv)(I) the approximate number of fire
    incidents attended, including information related
    to the type of fire incidents and the role of the
    firefighter in responding to the incident; or
    (II) <>  in the case of a
    firefighter for whom information on such number
    and type is unavailable, an estimate of such
    number and type based on the method developed
    under subsection (d)(1)(D); and
    (v) other medical information and health
    history, including additional risk factors, as
    appropriate, and other information relevant to a
    cancer incidence study of firefighters.
    (2) Information on diagnoses and treatment.--In carrying out
    paragraph (1), with respect to diagnoses and treatment of
    firefighters with cancer, the Secretary shall, as appropriate,
    enable the Firefighter Registry to electronically connect to
    State-based cancer registries, for a purpose described by clause
    (vi) or (vii) of section 399B(c)(2)(D) of the Public Health
    Service Act (42 U.S.C. 280e(c)(2)(D)), to obtain--
    (A) date of diagnoses and source of information; and
    (B) pathological data characterizing the cancer,
    including cancer site, state of disease (pursuant to
    Staging Guide), incidence, and type of treatment.

    (d) <>  Firefighter Registry Coordination
    Strategy.--
    (1) Required strategy.--The Secretary shall, in consultation
    with the relevant stakeholders identified in subsection (e),
    including epidemiologists and pathologists, develop a strategy
    to coordinate data collection activities, including within
    existing State registries, for inclusion in the Firefighter
    Registry established under this Act. The strategy may include
    the following:
    (A) Increasing awareness of the Firefighter Registry
    and encouraging participation among volunteer, paid-on-
    call, and career firefighters.
    (B) Consideration of unique data collection needs
    that may arise to generate a statistically reliable
    representation of minority, female, and volunteer
    firefighters, including methods, as needed, to encourage
    participation from such populations.
    (C) Information on how the Secretary will store data
    described in subsection (c)(1) and provide electronic
    access to relevant health information described in
    subsection (c)(2).
    (D) Working in consultation with the experts
    described in subsection (e), a reliable and standardized
    method for estimating the number of fire incidents
    attended by a firefighter as well as the type of fire
    incident so attended in the case such firefighter is
    unable to provide such information.
    (2) Report to congress.--The Secretary shall submit the
    strategy described in paragraph (1) to the Committee on Energy

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    and Commerce of the House of Representatives and the Committee
    on Health, Education, Labor, and Pensions of the Senate not
    later than 30 days after the date of the completion of the
    strategy.
    (3) Guidance for inclusion and maintenance of data on
    firefighters.--The Secretary shall develop, in consultation with
    the stakeholders identified in subsection (e), State health
    agencies, State departments of homeland security, and volunteer,
    paid-on-call, combination, and career firefighting agencies, a
    strategy for inclusion of firefighters in the registry that are
    representative of the general population of firefighters, that
    outlines the following:
    (A) How new information about firefighters will be
    submitted to the Firefighter Registry for inclusion.
    (B) How information about firefighters will be
    maintained and updated in the Firefighter Registry over
    time.
    (C) A method for estimating the number of fire
    incidents attended by a firefighter as well as the type
    of fire incident so attended in the case such
    firefighter is unable to provide such information.
    (D) Further information, as deemed necessary by the
    Secretary.

    (e) Consultation and Report.--The Secretary shall consult with non-
    Federal experts on the Firefighter Registry established under this
    section, and shall submit to the Committee on Health, Education, Labor,
    and Pensions of the Senate and the Committee on Energy and Commerce of
    the House of Representatives a report that includes, as appropriate,
    information on goals achieved and improvements needed to strengthen the
    Firefighter Registry. Such non-Federal experts shall include the
    following:
    (1) Public health experts with experience in developing and
    maintaining cancer registries.
    (2) Epidemiologists with experience in studying cancer
    incidence.
    (3) Clinicians with experience in diagnosing and treating
    cancer incidence.
    (4) Active and retired volunteer, paid-on-call, and career
    firefighters as well as relevant national fire and emergency
    response organizations.

    (f) <>  Research Availability.--Subject
    to subsection (g), the Secretary shall ensure that information and
    analysis in the Firefighter Registry are available, as appropriate, to
    the public, including researchers, firefighters, and national fire
    service organizations.

    (g) Privacy.--In carrying out this Act, the Secretary shall ensure
    that information in and analysis of the Firefighter Registry are made
    available in a manner that, at a minimum, protects personal privacy to
    the extent required by applicable Federal and State privacy law.

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    (h) Authorization of Funds.--To carry out this section, there are
    authorized to be appropriated $2,500,000 for each of the fiscal years
    2018 through 2022.

    Approved July 7, 2018.

    LEGISLATIVE HISTORY--H.R. 931 (S. 382):
    ---------------------------------------------------------------------------

    HOUSE REPORTS: No. 115-301 (Comm. on Energy and Commerce).
    CONGRESSIONAL RECORD:
    Vol. 163 (2017):
    Sept. 12, considered and passed
    House.
    Vol. 164 (2018):
    May 10, considered and passed
    Senate, amended.
    June 22, House concurred in Senate
    amendment.