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Privacy Act System Notice 09-20-0147

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System name: System name: Occupational Health Epidemiological Studies and EEOICPA Program Records and WTC Health Program Records, HHS/CDC/NIOSH.

Security classification: None.

System location: WTC Health Program, NIOSH, Century Center Boulevard, Building 2400, Mail Stop E-74, Atlanta, GA 30329.

Division of Surveillance, Hazard Evaluation, and Field Studies (DSHEFS), National Institute for Occupational Safety and Health (NIOSH), Robert A. Taft Laboratories, 4676 Columbia Parkway, Cincinnati, OH 45226.

Division of Respiratory Disease Studies (DRDS), National Institute for Occupational Safety and Health (NIOSH), 1095 Willowdale Road, Morgantown, WV 20505-2888.

Pittsburgh Research Laboratory, NIOSH, 626 Cochrans Mill Road, Pittsburgh, PA 15156.

Spokane Research Laboratory, NIOSH, 315 E. Montgomery Avenue, Spokane, WA 99207.

Office of Compensation Analysis and Support (OCAS), NIOSH, Robert A. Taft Laboratories, 4676 Columbia Parkway, Cincinnati, Ohio 45226.

and

Federal Records Center, 3150 Bertwynn Drive, Dayton, OH 45439.

Data are also occasionally located at contractor sites as studies are developed, data collected, and reports written. A list of contractor sites where individually identifiable data are currently located is available upon request to the system manager.

Also, occasionally data may be located at the facilities of collaborating researchers where analyses are performed, data collected and reports written. A list of these facilities is available upon request to the system manager. Data may be located only at those facilities that have an adequate data security program and the collaborating researcher must return the data to NIOSH or destroy individual identifiers at the conclusion of the project.

Categories of individuals covered by the system: That segment of the population exposed to physical and/or chemical agents or other workplace hazards that may damage the human body in any way. Some examples are: 1) organic carcinogens; 2) inorganic carcinogens; 3) mucosal or dermal irritants; 4) fibrogenic materials; 5) acute toxic agents including sensitizing agents; 6) neurotoxic agents; 7) mutagenic (male and female) and teratogenic agents; 8) bio-accumulating non-carcinogen agents; 9) chronic vascular disease-causing agents; and (10) ionizing radiation. Also included are those individuals in the general population who have been selected as control groups. Workers employed by the Department of Energy and its predecessor agencies and their contractors are also included, as are cancer–related claimants under the Energy Employees Occupational Illness Compensation Program Act of 2000 (EEOICPA). Individuals enrolled in or otherwise claiming eligibility and qualification for enrollment in the WTC Health Program created under Title XXXIII of the Public Health Service Act.

Categories of records in the system: Physical exams, sputum cytology results, questionnaires, urine test records, X-rays, medical history, pulmonary function test records, medical disability forms, blood test records, hearing test results, smoking history, occupational histories, previous and current employment records, union membership records, driver's license data, demographic information, exposure history information and test results are examples of the records in this system. The specific types of records collected and maintained are determined by the needs of the individual study. Also included are records of cancer-related claimants under EEOICPA." Also included are applications for enrollment in the WTC Health Program and, once enrolled, screening and medical records, and financial records related to payment and reimbursements for care under the WTC program.

Authority for maintenance of the system: Public Health Service Act, Section 301, "Research and Investigation" (42 U.S.C. 241); Occupational Safety and Health Act, Section 20, "Research and Related Activities" (29 U.S.C. 669); the Federal Mine Safety and Health Act of 1977, Section 501, "Research" (30 U.S.C. 951) and the Energy Employees Occupational Illness Compensation Program Act of 2000 (EEOICPA) (42 U.S.C.S. 7384, et seq.); and the Public Health Service Act, Title XXXIII, "World Trade Center Health Program" (42 U.S.C. §§ 300mm – 300mm-61).

Purpose(s): Studies carried out under this system are to evaluate mortality and morbidity of occupationally related diseases and injuries, to determine their causes, and to lead toward prevention of occupationally related diseases and injuries in the future. EEOICPA records are maintained to enable NIOSH to fulfill its dose reconstruction responsibilities under the Act. WTC Health Program records in this system are maintained and used to enable NIOSH to fulfill WTC Program Administrator responsibilities make determinations about eligibility and qualification, provide for medical care, pay for that care, and coordinate with other health benefit programs under Title XXXIII of the Public Health Service Act, 42 U.S.C. §§ 300mm – 300mm-61.

Routine uses of records maintained in the system, including categories of users and the purposes of such uses: In the event of litigation where the defendant is: (a) The Department, any component of the Department, or any employee of the Department in his or her official capacity; (b) the United States where the Department determines that the claim, if successful, is likely to directly affect the operations of the Department or any of its components; or (c) any Department employee in his or her individual capacity where the Department of Justice has agreed to represent such employee, for example, in defending a claim against the Public Health Service based upon an individual's mental or physical condition and alleged to have arisen because of activities of the Public Health Service in connection with such individual, disclosure may be made to the Department of Justice to enable that Department to present an effective defense, provided that such disclosure is compatible with the purpose for which the records were collected. Records may be disclosed to the Department of Justice when (1) HHS, or any component thereof; or (2) any employee of HHS in his or her official capacity; or (3) any employee of HHS in his or her individual capacity where the Department of Justice or HHS has agreed to represent the employee; or (4) the United States, is a party to litigation or has an interest in such litigation, and the use of such records by the Department of Justice is deemed by HHS to be relevant and necessary to the litigation; provided, however, that in each case it has been determined that the disclosure is compatible with the purpose for which the records were collected.

Records may be disclosed to a contractor performing or working on a contract for HHS and who has a need to have access to the information in the performance of its duties or activities for the HHS in accordance with law and with the contract. The contractor is required to comply with the applicable provisions of the Privacy Act.

Records may be disclosed to a contractor performing or working on a contract for HHS and who has a need to have access to the information in the performance of its duties or activities for the HHS in accordance with law and with the contract. The contractor is required to comply with the applicable provisions of the Privacy Act.

Records subject to the Privacy Act are disclosed to private firms for data entry, scientific support services, nosology coding, computer systems analysis and computer programming services. The contractors promptly return data entry records after the contracted work is completed. The contractors are required to maintain Privacy Act safeguards.

Certain diseases or exposures may be reported to State and/or local health departments where the State has a legally constituted reporting program for communicable diseases and which provides for the confidentiality of the information.

Disclosure of records or portions of records may be made to a Member of Congress or a Congressional staff member submitting a verified request involving an individual who is entitled to the information and has requested assistance from the Member or staff member. The Member of Congress or Congressional staff member must provide a copy of the individual's written request for assistance.

Disclosure may be made to NIOSH collaborating researchers (e.g., NIOSH contractors, grantees, cooperative agreement holders, or other Federal or State scientists) in order to accomplish the research purpose for which the records are collected. The collaborating researchers must agree in writing to comply with the confidentiality provisions of the Privacy Act and NIOSH must have determined that the researchers' data security procedures will protect confidentiality.

THE FOLLOWING ROUTINE USES APPLY ONLY TO EPIDEMIOLOGICAL STUDIES:

In the event of litigation initiated at the request of NIOSH, the Institute may disclose such records as it deems desirable or necessary to the Department of Justice and to the Department of Labor, Office of the Solicitor, where appropriate, to enable the Departments to effectively represent the Institute, provided such disclosure is compatible with the purpose for which the records were collected. The only types of litigation proceedings that NIOSH is authorized to request are: (1) Enforcement of a subpoena issued to an employer to provide relevant information; and (2) administrative search warrants to obtain access to places of employment and relevant information therein and related contempt citations against an employer for failure to comply with a warrant obtained by the Institute; and (3) injunctive relief against employers or mine operators to obtain access to relevant information

Portions of records (name, Social Security number if known, date of birth, and last known address) may be disclosed to one or more of the sources selected from those listed in Appendix I, as applicable. This may be done for obtaining a determination regarding an individual's health status and last known address. If the sources determine that the individual is dead, NIOSH may obtain death certificates, which state the cause of death, from the appropriate Federal, State or local agency. If the individual is alive, NIOSH may obtain information on health status from disease registries or on last known address in order to contact the individual for a health study or to inform him or her of health findings. This information on health status enables NIOSH to evaluate whether excess occupationally related mortality or morbidity is occurring.

Disclosure of epidemiologic study records pertaining to uranium workers may be made to the Department of Justice to be used in determining eligibility for compensation payments to the uranium workers or their survivors.

Records may be disclosed by CDC in connection with public health activities to the Social Security Administration for sources of locating information to accomplish the research or program purposes for which the records were collected

THE FOLLOWING ROUTINE USES APPLY ONLY TO EEOICPA PROGRAM RECORDS:

Disclosure of dose reconstructions, epidemiologic study records and employment and medical information pertaining to Department of Energy employees and other cancer-related claimants covered under the Energy Employees Occupational Illness Compensation Program Act may be made to the Department of Labor to be used in determining eligibility for compensation payments to such claimants and in defending its determinations under the Act

Disclosure of personal identifying information associated with cancer-related claims under the Energy Employees Occupational Illness Compensation Program Act may be made to the Department of Energy, other federal agencies, other government or private entities and to private-sector employers to permit these entities to retrieve records required to reconstruct radiation doses and to enable NIOSH to evaluate petitions for inclusion in the Special Exposure Cohort.

Completed dose reconstruction reports for cancer-related claims under the Energy Employees Occupational Illness Compensation Program Act may be released to the Department of Energy and the Department of Labor to permit these entities to fulfill EEOICPA and HHS dose reconstruction regulation requirements to notify claimants of their dose reconstruction results. Disclosure of personal identifying information associated with cancer-related claims under the Energy Employees Occupational Illness Compensation Program Act may be made to identified witnesses as designated by the Office of Compensation Analysis and Support to assist NIOSH in obtaining information required to complete the dose reconstruction process and to enable NIOSH to evaluate petitions for inclusion in the Special Exposure Cohort.

Records may also be disclosed when deemed desirable or necessary, to the Department of Justice, and/or the Department of Labor, to enable those Departments to effectively represent the Department of Health and Human Services and/or the Department of Labor in litigation involving the Energy Employees Occupational Illness Compensation Program Act of 2000 (EEOICPA).

THE FOLLOWING ROUTINE USES APPLY ONLY TO WTC HEALTH PROGRAM RECORDS:

Disclosure to the Department of Justice and its contractors provide terrorist screening support in accordance with NIOSH's statutory obligation to determine whether an individual is on the "terrorist watch list" as specified in Section 3311 and Section 3321 of the Zadroga Act and is eligible and qualified to be enrolled or certified in the WTC Health Program as specified by statute. Disclosure will be limited to only the information that is necessary to determine eligibility and qualification under the statute. The Department of Justice and its contractors will only use the information for the purpose of determining eligibility and qualification for the WTC Health Program and will not retain the information for longer than is necessary to accomplish that purpose. Personal identifying information needed for this screening process will be destroyed or returned to NIOSH once it is determined that an individual is not on the "terrorist watch list."

Disclosure of personally identifying information to applicable entities for the purpose of reducing or recouping WTC Health Program payments made to individuals under a workers’ compensation law or plan of the United States, a State, or locality, or other work-related injury or illness benefit plan of the employer of such worker or public or private health plan as required under Title XXXIII of the Public Health Service Act.

Policies and practices for storing, retrieving, accessing, retaining, and disposing of records in the system:

Storage: Manager files, card files, electronic computer tapes, disks, files and printouts, microfilm, microfiche, and other files as appropriate.

Retrievability: Name, assigned identification number, or social security number

Safeguards:

  1. Authorized Users: A database software security package is utilized to control unauthorized access to the system. Access is granted to only a limited number of physicians, scientists, statisticians, and designated support staff or contractors, as authorized by the system manager to accomplish the stated purposes for which the data in this system have been collected.
  1. Physical Safeguards: Hard copy records are kept in locked cabinets in locked rooms. Guard service in buildings provides screening of visitors. The limited access, secured computer room contains fire extinguishers and an overhead sprinkler system. Computer workstations and automated records are located in secured areas. Electronic anti-intrusion devices are in operation at the Federal Records Center.

  1. Procedural Safeguards: Data sets are password protected and/or encrypted. Protection for computerized records both on the mainframe and the NIOSH Local Area Network (LAN) includes programmed verification of valid user identification code and password prior to logging on to the system, mandatory password changes, limited log-ins, virus protection, and user rights/file attribute restrictions. Password protection imposes user name and password log-in requirements to prevent unauthorized access. Each user name is assigned limited access rights to files and directories at varying levels to control file sharing. There are routine daily backup procedures and secure off-site storage is available for backup tapes. Additional safeguards may be built into the program by the system analyst as warranted by the sensitivity of the data.

    Employees and contractor staff who maintain records are instructed to check with the system manager prior to making disclosures of data. When individually identified data are being used in a room, admittance at either government or contractor sites is restricted to specifically authorized personnel. Privacy Act provisions are included in contracts, and the Project Director, contract officers and project officers oversee compliance with these requirements. Upon completion of the contract, all data will be either returned to CDC or destroyed, as specified by the contract

  1. Implementation Guidelines: The safeguards outlined above are in accordance with the HHS Information Security Program Policy and FIPS Pub 200, "Minimum Security Requirements for Federal Information and Information Systems." Data maintained on CDC’s Mainframe and the NIOSH LAN are in compliance with OMB Circular A-130, Appendix III. Security is provided for information collection, processing, transmission, storage, and dissemination in general support systems and major applications. Security is provided for information collection, processing, transmission, storage, and dissemination in general support systems and major applications. The CDC LAN currently operates under a Microsoft Windows Server and is in compliance with applicable security standards.

Retention and disposal:  Records are retained and disposed of according to the provisions of the CDC Electronic Records Control Schedule for NIOSH records. Research records are maintained in the agency for three years after the close of the study. Records transferred to the Federal Records Center when no longer needed for evaluation and analysis are destroyed after 75 years for epidemiologic studies, unless needed for further study. Records from health hazard evaluations will be retained at least 20 years. EEOICPA program records are transferred to the Federal Records Center 15 years after the case file becomes inactive and are destroyed after 75 years. WTC Health Program records are transferred to the Federal Records Center 15 years after the case file becomes inactive and are destroyed after 75 years. Any records provided to the Department of Justice for the purpose of screening individuals against the "terrorist watch list" will be destroyed (and not retained by the Department of Justice) once it is determined that an individual is not on the "terrorist watch list."

Paper files that have been scanned to create electronic copies are disposed of after the copies are verified. Disposal methods include erasing computer tapes and burning or shredding paper materials.

System manager(s) and address

Director, WTC Health Program, NIOSH, Century Center Boulevard, Building 2400, Mail Stop E-74, Atlanta, GA 30329.

Program Management Officer, Division of Surveillance, Hazard valuations, and Field Studies (DSHEFS), National Institute for Occupational Safety and Health (NIOSH), Robert A. Taft Laboratories, Rm. 40A, 4676 Columbia Parkway, Cincinnati, OH 45226. .

Director, Division of Respiratory Disease Studies (DRDS), National Institute for Occupational Safety and Health (NIOSH), Bldg. ALOSH, Rm. H2920, 1095 Willowdale Road, Morgantown, WV 26505-2888.

Director, Spokane Research Laboratory, NIOSH, 315 E. Montgomery Avenue, Spokane, WA 99207

Policy coordination is provided by: Director, National Institute for Occupational Safety and Health (NIOSH), Bldg. HHH, Rm. 715H, 200 Independence Avenue, SW, Washington, D.C. 20201.

Director, Office of Compensation and Support (OCAS), NIOSH, Robert A. Taft Laboratories, 4676 Columbia Parkway, Cincinnati, OH 45226

Notification procedure: An individual may learn if a record exists about himself or herself by contacting the system manager at the above address. Requesters in person must provide driver's license or other positive identification. Individuals who do not appear in person must either: (1) submit a notarized request to verify their identity; or (2) certify that they are the individuals they claim to be and that they understand that the knowing and willful request for or acquisition of a record pertaining to an individual under false pretenses is a criminal offense under the Privacy Act subject to a $5,000 fine.

An individual who requests notification of or access to medical records shall, at the time the request is made, designate in writing a responsible representative who is willing to review the record and inform the subject individual of its contents at the representative's discretion. A subject individual will be granted direct access to a medical record if the system manager determines direct access is not likely to have adverse effect on the subject individual. The following information must be provided when requesting notification: (1) full name; (2) the approximate date and place of the study, if known; and (3) nature of the questionnaire or study in which the requester participated.

The following information must be provided when requesting notification: (1) full name; (2) the approximate date and place of the study, if known; and (3) nature of the questionnaire or study in which the requester participated.

Record access procedures: Same as notification procedures. Requesters should also reasonably specify the record contents being sought. An accounting of disclosures that have been made of the record, if any, may be requested.

Contesting record procedures: Contact the official at the address specified under System Manager above, reasonably identify the record and specify the information being contested, the corrective action sought, and the reasons for requesting the correction, along with supporting information to show how the record is inaccurate, incomplete, untimely, or irrelevant.

Record source categories: For research studies, vital status information is obtained from Federal, State and local governments and other available sources selected from those listed in Appendix I, but information is obtained directly from the individual and employer records, whenever possible. EEOICPA records are obtained from the individual subject and the employer’s records. WTC Health Program Records are obtained from individual applicants and enrollees, from medical providers who have treated eligible individuals, and from data centers that are repositories of demographic and clinical information about WTC responders and survivors.

Systems exempted from certain provisions of the act: None.

APPENDIX I - Potential Sources for Determination of Health Status, Vital Status and/or Last Known Address:

Military records
Appropriate State Motor Vehicle Registration Departments
Appropriate State Driver's License Departments
Appropriate State Government Division of:
Assistance Payments (Welfare), Social Services, Medical Services, Food Stamp Program, Child Support, Board of Corrections, Aging, Indian Affairs, Worker's Compensation, Disability Insurance
Retail Credit Association follow-up
Veterans Administration files
Appropriate employee union or association records
Appropriate company pension or employment records
Company group insurance records
Appropriate State Vital Statistics Offices
Life insurance companies
Railroad Retirement Board
Area nursing homes
Area Indian Trading Posts
Mailing List Correction Cards (U.S. Postal Service)
Letters and telephone conversations with former employees of the same establishment as cohort member
Appropriate local newspaper (obituaries)
Social Security Administration
Internal Revenue Service
National Death Index
Centers for Medicare & Medicaid Services
Pension Benefit Guarantee Corporation
State Disease Registries
Commercial Telephone Directories

[Federal Register: June 14, 2011 (Volume 76, Number 114)] [Notices] [Page 34706-34711] (PDF - 1 MB)

  • Page last updated: April 11, 2012
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