Privacy and confidentiality are important components of our research. Data and samples collected as part of the FFCCS are covered by a Certification of Confidentiality from the National Institutes of Health. A Certificate of Confidentiality is an NIH protection that means researchers cannot release study-related material that may identify you in any action or suit, including federal, state, or local civil, criminal, administrative, legislative, or other proceedings.

In addition, as part of ensuring protection for participants, the Fire Fighter Cancer Cohort Study is continually reviewed by an Institutional Review Board (IRB) at The University of Arizona. The IRB is responsible for reviewing human subjects research and determining if it is acceptable, according to applicable state and federal regulations and University policies designed to protect the rights and welfare of participants in research.

For any human subjects research concerns, FFCCS participants and fire department research liaisons should contact the FFCCS team at the University of Arizona or the Director of the Institutional Review Board at the University of Arizona at 520-626-8630 or VPR-IRB@arizona.edu.

The FFCCS co-leads and fire service partners have outlined policies and procedures (see link below for FFCCS Policies) to stress the primacy of privacy protections. The FFCCS administers all research data in accordance with legal, ethical, and best data management practices. This includes:

• The FFCCS will not share participants’ contact information;

• FFCCS will only use participants’ contact information for FFCCS-related activities such as sending follow-up surveys or opportunities to participate in new FFCCS research or closely-linked studies. All messages will be sent by the FFCCS;

• Any message from the FFCCS, including for closely-linked studies, will be clearly identified as originating from the FFCCS;

• For fire departments with research liaisons, FFCCS fire department liaisons will be notified prior to sending emails to their FFCCS participants; and

• To preserve data privacy, FFCCS is also covered by a Certificate of Confidentiality. This means that researchers cannot release or use information that may identify a participant unless the participant agrees to the release of their information. It specifically protects against compulsory disclosure of study participants’ information.