System Name: Morbidity Studies in Coal Mining, Metal and Non-metal Mining and General Industry, HHS/CDC/NIOSH.
Security Classification: None.
Division of Respiratory Disease Studies (DRDS), National Institute for Occupational Safety and Health (NIOSH), 1095 Willowdale Road, Morgantown, WV 26505-2845.
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: Persons working, or having worked at coal mining operations, mining operations other than coal and at workplaces not identified as surface mining or below ground mining operations and exposed or potentially exposed to substances which are known or suspected respiratory irritants or carcinogens. Also included are those individuals in the general population who have been selected as a control group.
Categories of Records in the System: Previous and current employment records, medical and occupational histories, demographic data, X-rays, smoking histories, results of medical tests such as pulmonary function data and spirometry test results, permission forms, industrial environmental data, and questionnaires. The specific types of records collected and maintained are determined by the research needs of the specific study.
Authority for Maintenance of the System: Occupational Safety and Health Act, Section 20, "Research and Related Activities" (29 U.S.C. 669); Federal Mine Safety and Health Act of l977, Sections 203, "Medical Examinations" and 50l, "Research" (30 U.S.C. 843, 95l); Public Health Service Act, Section 301, "Research and Investigation" (42 U.S.C. 241).
Purpose(s): The purpose of this system is to investigate occupationally related diseases at workplaces identified as general industry, surface mining, or below ground mining operations and to determine the cause and prevention of such diseases.
Routine Uses of Records Maintained in the System, Including Categories of Users and the Purposes of such Uses:
Data may be sent to State Vital Statistics Divisions to obtain death certificates and to missing person location agencies to find those individuals who cannot otherwise be located.
Disclosure may be made to a congressional office from the record of an individual in response to a verified inquiry from the congressional office made at the written request of that individual.
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 appropriate federal agencies and Department contractors that have a need to know the information for the purpose of assisting the Department's efforts to respond to a suspected or confirmed breach of the security or confidentiality of information disclosed is relevant and necessary for that assistance.
Records subject to the Privacy Act are disclosed to private firms for data entry, 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.
Data on the incidence of pneumoconiosis may be sent to the Mining Safety and Health Administration, Department of Labor.
Test data which indicate the existence of cancer may be provided to the State Cancer Registry where the State has a legally constituted cancer registry program which provides for the confidentiality of information.
Certain communicable diseases 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.
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 litigative proceedings that NIOSH is authorized to request are: (1) Enforcement of a subpoena issued to an employer to provide relevant information; or (2) contempt citation 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.
Disclosure may be made to NIOSH collaborating researchers (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.
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.
Policies and Practices for Storing, Retrieving, Accessing, Retaining, and Disposing of Records in the System—
Storage: Computer tapes/disks and printouts, CD ROM; microfiche, and manual files.
Retrievability: Name and/or assigned numerical identifier, plant name and study name are some of the indices used to retrieve records from this system. Social security numbers, supplied on a voluntary basis may occasionally be used for data retrieval.
1. Authorized users: The NIOSH mainframe computer, located within the Morgantown facility, uses a security package to control unauthorized access to the system. Attempts to gain access by unauthorized individuals are automatically recorded and reviewed on a daily basis. Access is granted to only a limited number of physicians, scientists, statisticians, and designated support staff of the Centers for Disease Control (CDC), or its contractors, as authorized by the system manager to accomplish the stated purposes for which the data in this system have been collected.
2. Physical safeguards: Access to the facility is monitored, and controlled after hours, by a 24-hour guard service. Hard copy records are kept in locked cabinets in locked rooms. Access to the computer room is controlled by a punch lock system. System print-outs are made available to the requester through the use of "pigeon-hole" mailboxes which are individually secured by (combination) locking doors. The local fire department is one mile from the facility, which is of structural steel and cement block construction, with pre-cast cement panels on the envelope. No combustible materials are used in the building construction, including all interior walls. The computer room is protected by a Halon gas, built-in extinguisher system. Heat sensors are installed, and portable fire extinguishers are located throughout the computer room. The active system files are backed up on a weekly basis. The entire system is backed up, with copies of the files stored in a secure, fireproof safe in a separate location within the facility.
3. Procedural safeguards: System security includes automatic suspension of accounts, forced password changes, and control of systems and data set access. Protection for computerized records includes programmed verification of valid user identification code, account code and password prior to acceptance of a terminal session or a job submission. Additional safeguards may be built into the program by the system analyst as warranted by the sensitivity of the data.
CDC and contractor employees 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 CDC or contractor sites is restricted to specifically authorized personnel. Privacy Act provisions are included in contracts, and the CDC 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.
4. Implementation guidelines: The safeguards outlined above are developed in accordance with Chapter 45-13, "Safeguarding Records Contained in Systems of Records," of the HHS General Administration Manual, supplementary Chapter PHS.hf: 45-13; Part 6, "Automated Information System Security," of the HHS Information Resources Management Manual; the National Bureau of Standards Federal Information Processing Standards (FIPS Pub. 41 and FIPS Pub. 31).
Retention and Disposal: Master records for completed studies are maintained in agency until transferred to the National Archives, which will occur within five years of completion. Source documents for computer data are disposed of when no longer needed in the study, as determined by the system manager, and as provided in the signed consent form, as appropriate. Disposal methods include erasing computer tapes, burning or shredding paper materials or transferring records to the Federal Records Center when no longer needed for evaluation and analysis. Electronic records are maintained according to the provisions of the Records Control Schedule for NIOSH Electronic Records, which is consistent with the records maintenance requirements for other forms of records. Copies of notifications to workers/private physicians of needed medical attention and/or medical treatment are destroyed when no longer needed for administrative purposes, but may be retained for as long as seventy years. Paper records are destroyed by paper recycling process when 20 years old, unless needed for further study.
System Manager(s) and Address(es):
Administrative Officer, Division of Respiratory Disease Studies (DRDS), National Institute for Occupational Safety and Health (NIOSH), 1095 Willowdale Road, MS 217, Morgantown, WV 26505-2845.
Epidemiologist, Epidemiological Investigations Branch, DRDS, NIOSH, 1095 Willowdale Road, MS 234, Morgantown, WV 26505-2845.
Policy coordination is provided by: Director, Division of Respiratory Disease Studies, National Institute for Occupational Safety and Health, 1095 Willowdale Road, MS 220, Morgantown, WV 26505-2845.
Notification Procedure: An individual may learn if a record exists about himself or herself by contacting the system manager at the address above. 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 dollars 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.
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: Information is obtained from the individual and from employer industry records. Vital status information is obtained from Federal, State and local governments and other available sources.
Systems Exempted from Certain Provisions of the Act: None.