Firefighter Cancer Registry Act of 2016

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Firefighter Cancer Registry Act of 
2016''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) Studies conducted since the 1990s have indicated a 
        strong link between firefighting and an increased risk for 
        several major cancers.
            (2) The cancers identified as most common among 
        firefighters according to these studies include testicular 
        cancer, which male firefighters are 102 percent more likely to 
        be diagnosed with, stomach cancer, multiple myeloma, and brain 
        cancer, among several others.
            (3) The heightened incidence of cancer among firefighters 
        has been attributed to their frequent exposure to a range of 
        harmful substances including resultant pyrolysis products, 
        toxic particulates, gases and fumes, metals such as cadmium and 
        lead, chemical substances such as benzene and vinyl chloride, 
        and minerals such as asbestos and silicates.
            (4) An extensive 2014 study conducted by the National 
        Institute of Occupational Safety and Health (NIOSH) over the 
        course of several years and which included almost 30,000 
        firefighters found that firefighters were at an increased risk 
        of being diagnosed with malignant mesothelioma and found 
        potential links between exposure to fire incidents and 
        heightened risks for lung cancer and leukemia, among several 
        others.
            (5) Past studies examining cancer incidence among 
        firefighters have been limited by the availability and 
        standardization of important epidemiological data, relatively 
        small sample sizes, inconsistencies in the operationalization 
        of key terms and metrics, incomplete employment histories, and 
        an underrepresentation of minority, female, and volunteer 
        firefighters.
            (6) Today, many States across the country maintain cancer 
        registries that collect and collate information regarding 
        cancer diagnoses, demographic information, and treatment plans. 
        State cancer registries have greatly contributed to overcoming 
        these obstacles by offering centralized repositories of 
        information, which researchers in the public and private 
        sectors can access when conducting research on cancer risks.
            (7) While these State-based cancer registries undoubtedly 
        contribute to furthering research related to assessing cancer 
        incidence among firefighters, a special purpose national cancer 
        registry would provide researchers and public health agencies 
        with more direct and comprehensive access to the specific set 
        of information they need to conduct more robust, focused, and 
        epidemiologically rigorous research on cancer incidence among 
        firefighters.
            (8) Efforts to understand cancer incidence among 
        firefighters through a specialized national cancer registry 
        will better inform the kinds of precautions firefighters should 
        take in the future, improve our understanding of key 
        epidemiological trends, and potentially lead to the development 
        of more sophisticated safety protocols to lower cancer risks.

SEC. 3. PATIENT REGISTRY FOR FIREFIGHTER CANCER INCIDENCE.

    (a) In General.--The Secretary of Health and Human Services, acting 
through the Director of the Centers for Disease Control and Prevention, 
shall develop and maintain a voluntary patient registry to collect data 
on cancer incidence among firefighters.
    (b) Use of Registry.--The patient registry shall be used for the 
following purposes:
            (1) To establish and improve collection infrastructure and 
        activities related to the nationwide monitoring of the 
        incidence of cancer among firefighters.
            (2) To collect, consolidate, store, and make publicly 
        available epidemiological information related to cancer 
        incidence and trends among firefighters.
    (c) Relevant Data.--In carrying out the voluntary data collection 
for purposes of inclusion under the patient registry under subsection 
(a), the Secretary should seek to include the following de-identified 
information:
            (1) With respect to cancer diagnoses and treatment of 
        firefighters, de-identified information on--
                    (A) full detailing of physical examinations and 
                medical history;
                    (B) complete detailing of all relevant diagnostic 
                tests and lab procedures;
                    (C) complete detailing of all pathology and 
                operative reports; and
                    (D) complete detailing of treatments undergone or 
                planned.
            (2) With respect to individual patient history relating to 
        the incidence of cancer among firefighters, de-identified 
        information on--
                    (A) basic demographic information, including the 
                age of the firefighter involved and age of onset of 
                cancer;
                    (B) a listing of status of the firefighter as 
                either volunteer, paid-on-call, or career firefighter;
                    (C) the number of years on the job and a detailing 
                of additional employment experience that was either 
                performed concurrently alongside firefighting service 
                or anytime thereafter;
                    (D)(i) a measure of the number of fire incidents 
                attended as well as the type of fire incidents (such as 
                residential house fire or commercial fire); or
                    (ii) in the case of a firefighter who is unable to 
                provide information on such number and type, an 
                estimate of such number and type based on the method 
                developed under subsection (d)(2); and
                    (E) a list of additional risk factors, including 
                smoking or drug use, as determined relevant by the 
                Secretary.
            (3) Any additional information that is deemed necessary by 
        the Secretary.
    (d) Methods.--
            (1) In general.--For the purposes described in subsection 
        (b), the Secretary is authorized to incorporate questions into 
        public health surveys, questionnaires, and other databases in 
        existence as of the date of enactment of this Act.
            (2) Ensuring representation of underrepresented groups in 
        registry.--In carrying out this section, the Secretary shall 
        take such measures as the Secretary deems appropriate to 
        encourage the inclusion of data on minority, female, and 
        volunteer firefighters in the registry established under this 
        section.
            (3) Method to estimate number and type of fire incidents.--
        For purposes of subsection (c)(2)(D), the Secretary, in 
        consultation with the experts described in subsection (e), 
        shall develop 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.
    (e) Consultation.--The Secretary shall, on a regular basis, seek 
feedback regarding the utility of the registry established under this 
section and ways the registry can be improved from non-Federal experts 
in the following areas:
            (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.--The Secretary shall develop and make 
public an approval process for making de-identified cancer registry 
data submitted for inclusion in the patient registry developed under 
subsection (a) available without a fee for public research purposes. 
Such process shall provide that such data shall be made available for 
such research purposes only if there is an agreement to make findings, 
journal articles, or other print or web-based publications derived from 
such research public or available to the relevant stakeholders 
identified in subsection (e)(4).
    (g) Privacy.--In carrying out this Act, the Secretary shall apply 
to the registry developed under subsection (a) data security provisions 
and privacy standards that comply with the best practices of the 
Centers for Disease Control and Prevention, as defined by the National 
Institute of Standards and Technology in Special Publication 800-37 
revision 1, as well as the HIPAA privacy regulation, as defined in 
section 1180(b)(3) of the Social Security Act (42 U.S.C. 1320d-
9(b)(3)).
    (h) Authorization of Funds.--To carry out this section, there are 
authorized to be appropriated $2,500,000 for each of the fiscal years 
2017 through 2021.

Summary: Firefighter Cancer Registry Act of 2016 This bill requires the Centers for Disease Control and Prevention (CDC) to develop and maintain a voluntary patient registry to monitor, collect, and make available epidemiological information related to cancer incidence and trends among firefighters. The CDC should seek to include specified information in the registry, including the number and type of fire incidents attended by an individual. To collect information for the registry, the CDC may incorporate questions into existing public health surveys, questionnaires, and other databases. The CDC must: (1) encourage the inclusion in the registry of data on minority, female, and volunteer firefighters. And (2) seek feedback on the registry from nonfederal experts. The CDC must develop an approval process for making registry data available for research without a fee if findings or publications derived from the research are made public or available to stakeholders.