Privacy Act: [ Table of Contents]...

	Web GovRecords.org

<DOC>
[2001 Privacy Act]
[From the U.S. Government Printing Office via GPO Access]





              Agency for Toxic Substances and Disease Registry

   #.. 09-19-0001

   #....System name: Records of Persons Exposed or Potentially Exposed 
      to Toxic or Hazardous Substances, HHS/ATSDR/OHA.

     System location: 
       Division of Health Studies, Agency for Toxic Substances and 
   Disease Registry, Executive Park, Bldg. 4, 1600 Clifton Road, 
   Atlanta, GA 30333.
       Division of Health Assessment and Consultation, Agency for Toxic 
   Substances and Disease Registry, Executive Park, Bldg. 31, 1600 
   Clifton Road, Atlanta, GA 30333.
       Federal Records Center, 1557 St. Joseph Avenue, East Point, GA 
   30333.
       Data are also located at contractor sites. A list of contractor 
   sites where individually identified data are currently located is 
   available upon request to the System Manager.
     Categories of individuals covered by the system: 
       Individuals exposed or potentially exposed to toxic or hazardous 
   substances may include the following: (1) Selected persons living or 
   having lived near a hazardous waste site, including facilities owned 
   or operated by the United States; (2) Persons exposed or potentially 
   exposed to environmental hazards resulting from ingestion of 
   contaminated drinking water, persons exposed to contaminated soil, 
   persons living on mining wastes, persons inhaling toxic substances 
   (all of which may or may not be the result of contamination by a 
   specified waste site); (3) Participants in health outcome studies 
   (including exposure studies, symptom and disease prevalence studies, 
   cluster investigations), and epidemiologic studies to determine the 
   public health threat of exposure to hazardous or toxic substances; 
   (4) Registry participants with exposures associated with specific 
   chemicals, (5) Participants from site of emergency activities, and 
   other sites that are the subject of a citizen's petition; (6) Persons 
   working or having worked in response actions at hazardous waste sites 
   or other occupational settings where exposure to hazardous substances 
   occurred. The first five categories of persons above may include 
   children as well as adults.
     Categories of records in the system: 
       Name, address, (including length of time at current address), 
   telephone number, date of birth, Social Security number, sex, current 
   and past occupations, dates, pathways and routes of toxic or 
   hazardous substance exposure or potential exposure, smoking history, 
   results of medical and laboratory tests, records on biological 
   specimens (e.g. blood, urine, etc.), and related documents such as 
   questionnaire responses. The specific type of records collected and 
   maintained is determined by the needs of the individual registry or 
   study.
   Purpose(s): 
       Records in this system are used to carry out the legislated 
   environmental public health mandates of the Agency for Toxic 
   Substances and Disease Registry (ATSDR). Specifically this 
   information is used to: (1) Identify the public health threat caused 
   by exposure to toxic and hazardous substances utilizing health 
   outcome studies, epidemiologic studies, and other health effects 
   studies; and (2) establish and maintain national registries of 
   persons exposed to toxic substances and persons with serious diseases 
   and illnesses associated or potentially associated with exposure to 
   toxic substances. Registries will have the additional purposes of 
   tracking exposed individuals, keeping them informed of health effects 
   of exposure, preventive measures and possible breakthroughs in 
   treatment, along with serving as a centralized location for research 
   data on these exposed individuals.
       Records may be disclosed to the National Center for Environmental 
   Health, Centers for Disease Control and Prevention, for laboratory 
   analysis of samples and for collaborative efforts (i.e., providing 
   staff, performing statistical analysis, etc.) in coordinating 
   investigations.
       Records (i.e., name, Social Security number, date of birth) may 
   be disclosed to the National Center for Health Statistics to obtain a 
   determination of vital status. Death certificates with the cause of 
   death will then be obtained from Federal, State, or local agencies to 
   enable ATSDR (1) to determine whether excess mortality is occurring 
   among individuals exposed to toxic or hazardous substances, and (2) 
   to notify similarly exposed persons. Records may also be disclosed to 
   the Social Security Administration for additional sources of locating 
   information.
     Authority for maintenance of the system: 
       Comprehensive Environmental Response, Compensation, and Liability 
   Act of 1980 as amended by Superfund Amendments and Reauthorization 
   Act of 1986 (42 U.S.C. 9601, 9604); and the Resource Conservation and 
   Recovery Act of 1976 as amended in 1984 (42 U.S.C. 6901).
     Routine uses of records maintained in the system, including 
   categories of users and the purposes of such uses: 
       1. Records may be disclosed to Department of Health and Human 
   Services contractors to locate individuals exposed or potentially 
   exposed to toxic or hazardous substances (e.g., in the establishment 
   of the National Exposure Registry), conduct interviews, perform 
   medical examinations, collect and analyze biological specimens, 
   evaluate and interpret data, and perform followup health 
   investigations so that the research purposes for which the records 
   are collected may be accomplished. The contractor must comply with 
   the requirements of the Privacy Act with respect to such records.
       2. Records may be disclosed to Federal agencies such as the 
   Environmental Protection Agency (EPA), State and local health 
   departments, and other public health or cooperating medical 
   authorities in connection with program activities and related 
   collaborative efforts to deal more effectively with exposures to 
   hazardous or toxic substances, and to satisfy mandatory reporting 
   requirements when applicable.
       3. Records (i.e., name, Social Security number) may be disclosed 
   to other Federal agencies and to missing person location agencies to 
   obtain information to aid in locating individuals involved in these 
   studies.
       4. Records may be disclosed for a research purpose, when the 
   Department: (A) Has determined that the use or disclosure does not 
   violate legal or policy limitations under which the record was 
   provided, collected, or obtained; (B) has determined that the 
   research purpose (1) cannot be reasonably accomplished unless the 
   record is provided in individually identified form, and (2) warrants 
   the risk to the privacy of the individual that additional exposure of 
   the record might bring; (C) has required the recipient to (1) 
   establish reasonable administrative, technical, and physical 
   safeguards to prevent unauthorized use or disclosure of the record, 
   (2) remove or destroy the information that identifies the individual 
   at the earliest time at which removal or destruction can be 
   accomplished consistent with the purpose of the research project, 
   unless the recipient has presented adequate justification of a 
   research or health nature for retaining such information, and (3) 
   make no further use or disclosure of the record except (a) in 
   emergency circumstances affecting the health or safety of any 
   individual, (b) for use in another research project, under these same 
   conditions, and with written authorization of the Department, (c) for 
   disclosure to a properly identified person for the purpose of an 
   audit related to the research project, if information that would 
   enable research subjects to be identified is removed or destroyed at 
   the earliest opportunity consistent with the purpose of the audit, or 
   (d) when required by law; (D) has secured a written statement 
   attesting to the recipient's understanding of, and willingness to 
   abide by these provisions.
       5. Disclosures may be made to a congressional office from the 
   records of an individual, in response to a verified inquiry from the 
   congressional office made at the written request of that individual.
       6. In the event of litigation initiated by EPA in collaboration 
   with ATSDR, ATSDR may disclose such records as it deems desirable or 
   necessary to the Department of Justice to enable the Department to 
   effectively represent ATSDR. The types of litigative proceedings that 
   ATSDR may request include the recovery of expenses incurred in 
   cleanup operations at Superfund or Resource Conservation and Recovery 
   Act sites, including program and staff costs.
       7. 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 Justice Department 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.
     Policies and practices for storing, retrieving, accessing, 
   retaining, and disposing of records in the system: 
     Storage: 
       File folders, computer tapes and disks (hard and floppy).
     Retrievability: 
       By name or Social Security number.
     Safeguards: 
       The following special safeguards are provided to protect the 
   records from inadvertent disclosure:
       1. Authorized Users: Access is granted to only a limited number 
   of physicians, scientists, statisticians, and designated support 
   staff of ATSDR or its contractors, as authorized by the system 
   manager to accomplish the stated purposes for which the data in this 
   system have been collected. A list of authorized users will be 
   maintained by the system manager.
       2. Physical Safeguards. Questionnaires, log books, and other 
   source data are maintained in locked cabinets in locked rooms, 24-
   hour guard service in buildings, personnel screening of visitors, 
   electronic anti-intrusion devices in operation at the Federal Records 
   Center (FRC), fire extinguishers, overhead sprinkler system, and 
   card-access control equipment in the mainframe computer room (Clifton 
   Road facility), computer terminals, lockable personal computers, and 
   automated records located in secured areas.
       3. Procedural Safeguards: Protection for computerized records 
   includes programmed verification of valid user identification code, 
   account code and password prior to acceptance of a terminal session 
   or job submission, computer software to control access, frequently 
   changed passwords, and Fault Management System.
       Knowledge of individual tape passwords is required to access 
   tapes, and acces to systems is limited to users obtaining prior 
   supervisory approval. When Privacy Act tapes are scratched, a special 
   ``certified'' process is performed in which tapes are completely 
   written over to avoid inadvertent data disclosure. When possible, a 
   backup copy of data is stored at an offsite location and a log kept 
   of all changes to each file and all persons reviewing the file. 
   Selected safeguards will be applicable to specific elements of the 
   system, as appropriate. Additional safeguards may also be built into 
   the program by the system analyst as warranted by the sensitivity of 
   the specific data set.
       ATSDR and contractor employees who maintain records are 
   instructed in specific procedures to protect the security of records, 
   and are 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 ATSDR or contractor sites is restricted to 
   specifically authorized personnel.
       Appropriate Privacy Act provisions are included in contracts and 
   the ATSDR Project Director, contract officers, and project officers 
   oversee compliance with these requirements. Upon completion of the 
   contract, all data will be either returned to ATSDR 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 66, ``Automated 
   Information Systems Security,'' of the HHS Information Resources 
   Management Manual; the National Bureau of Standards Federal 
   information Processing Standards (FIPS Pub. 41 and FIPS Pub. 31). FRC 
   safeguards are in compliance with GSA Federal Property Management 
   Regulations, Subchapter B-Archives and Records.
     Retention and disposal: 
       A Comprehensive Records Control Schedule has been approved for 
   ATSDR which designates the procedures which allow the system managers 
   to retain records for their designated life. Registry records will be 
   actively maintained as long as funding is provided for by 
   legislation. Contractors will retain the records only as long as 
   necessary to complete data collection and verify ATSDR's receipt of 
   the data in usable form. Record copy of study reports is maintained 
   in the agency from two to three years in accordance with retention 
   schedules. Source documents for computer tapes or disks are disposed 
   of when no longer needed in the study as specified by the records 
   control schedule.
       Records may be transferred to a Federal Records Center for 
   storage when no longer needed for evaluation or analysis. Disposal 
   methods include the paper recycling process, burning or shredding 
   hard copy records, and erasing computer tapes and disks.
     System manager(s) and address: 
       Director, Division of Health Studies, Agency for Toxic Substances 
   and Disease Registry, Executive Park, Bldg. 4, 1600 Clifton Road, 
   Atlanta, GA 30333.
       Director, Division of Health Assessment and Consultation, Agency 
   for Toxic Substances and Disease Registry, Executive Park, Bldg. 31, 
   1600 Clifton Road, Atlanta, GA 30333.
       Policy coordination is provided by: Deputy Assistant 
   Administrator, Agency for Toxic Substances and Disease Registry, 
   Executive Park, Bldg. 37, 1600 Clifton Road, Atlanta, GA 30333.
     Notification procedure: 
       An individual may learn if a record exists about himself/herself 
   by contacting the appropriate system manager at the address above. 
   Persons who knowingly and willfully request or acquire a record 
   pertaining to an individual under false pretenses are subject to 
   criminal prosecution. Requesters in person must provide photo 
   identification (such as driver's license) or other positive 
   identification that would authenticate the identity of the individual 
   making the request. Individuals who do not appear in person must 
   submit a request which has been notarized to verify their identity. A 
   parent or guardian who requests notification of, or access to, a 
   minor's medical record must provide a birth certificate (or notarized 
   copy), court order, or other competent evidence of guardianship. An 
   individual who requests notification of, or access to, a medical 
   record shall at the time the request is made, designate in writing a 
   responsible representative (who may be a physician, other health 
   professional, or other responsible individual) who will be willing to 
   review the record and inform the subject individual of its contents 
   at the representative's discretion.
       In addition, the following information should be provided when 
   requesting notification: (1) Full name and Social Security number; 
   (2) nature of the study, or probable exposure or disease subregistry 
   which might include the requester.
     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 also be 
   requested.
     Contesting record procedures: 
       Contact the system manager at the address specified 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: 
       Subject individuals, families of deceased individuals, concerned 
   citizens associated with a particular site, State and local health 
   departments, physican records, hospital records, Social Security 
   Administration, Environmental Protection Agency and other agencies 
   responsible for environmental public health.
     Systems exempted from certain provisions of the act: 
       None.

Other Popular 1997 Privacy Act Documents Documents:

Other Documents:

1997 Privacy Act Documents Records and Documents