text: 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.
target: 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.
feat_title: Firefighter Cancer Registry Act of 2016