Defense Privacy and Civil Liberties Office

U.S. Department of Defense

System of Record Notices (SORNs)

DOD Component Notice

Defense Health Agency

EDHA 04 DoD

SYSTEM NAME:

Defense Bone Marrow Donor Program  (November 18, 2013,  78 FR 69076)

SYSTEM LOCATION:

Primary system: Naval Medical Research Center, Silver Spring, MD 20910 and C. W. Bill Young/Department of Defense Marrow Donor Center, Naval Medical Research Center and Georgetown University Medical Center, 11333 Woodglen Drive, Rockville MD 20852-3071.

CATEGORIES OF INDIVIDUALS COVERED BY THE SYSTEM:

Department of Defense military and civilian personnel and their dependents that have volunteered for and been accepted as potential bone marrow donors.

CATEGORIES OF RECORDS IN THE SYSTEM:

Donor registration and consent forms (or a notation in writing if the consent was obtained telephonically) including consents for testing and to donate a blood sample or buccal swab for HLA (human leukocyte antigen) typing and other genetic tests needed for matching a potential donor and patient that may affect transplant outcome; a consent to donate platelets; a consent to donate hematopoietic progenitor cells (HPC) from the bone marrow or from blood, if compatible with a patient; a consent to undergo anesthesia if selected to donate marrow or a consent to receive filgrastim followed by phereses for blood progenitor cells or consent for blood donation or phereses to collect donor blood lymphocytes for donor lymphocyte infusion as part of the transplant; report of physical examination of the donor to include complete medical history and the results of laboratory and other tests (X-ray, electrocardiogram, virology, etc.) and examining physician's report to the donor center; information pertinent to the collection process including post hospitalization follow-up; donor's written consent for further donations and insurance information offered through the National Marrow Donor Program. Donors may be contacted for additional approved research programs and if the donor agrees additional consents will be obtained. Data items include: Name, Social Security Number (SSN), a bar-coded Donor Identification Number (DIN) and genetic matching types (HLA) type and additional transplant matching type; donor's address, place of work, home and work telephone numbers; names, addresses and telephone numbers of donor's relatives and friends; donor's race/ethnicity; hospital and hospital provider number, city and State; name of transplant center; medical follow-up on the donor after marrow or blood hematopoietic progenitor cell donation.

AUTHORITY FOR MAINTENANCE OF THE SYSTEM:

10 U.S.C. 113, Secretary of Defense; 10 U.S.C. 136, Under Secretary of Defense for Personnel and Readiness; 10 U.S.C. 3013, Secretary of the Army; 10 U.S.C. 5013, Secretary of the Navy; 10 U.S.C. 8013, Secretary of the Air Force; Pub L. 101-302, Dire Emergency Supplemental Appropriations for Disaster Assistance, Food Stamps, Unemployment Compensation Administration, and Other Urgent Needs, and Transfers, and Reducing Funds Budgeted for Military Spending Act of 1990 and E.O. 9397 (SSN).

PURPOSE(S):

To tissue type as many donors as possible for inclusion in the National Registry of marrow donors. This will offer patients requiring bone marrow or blood hematopoietic progenitor cell (PBSC) transplants access to as many potential donors as possible for the purpose of obtaining compatible match.

To list registered donors with the National Coordinating Center for the purpose of obtaining a marrow match. Information released will consist of DIN, donor's race, date of birth and sex, genetic matching types (HLA), only.

ROUTINE USES OF RECORDS MAINTAINED IN THE SYSTEM, INCLUDING CATEGORIES OF USERS AND THE PURPOSES OF SUCH USES:

In addition to those disclosures generally permitted under 5 U.S.C. 552a(b) of the Privacy Act, these records or information contained therein may specifically be disclosed outside the DoD as a routine use pursuant to 5 U.S.C. 552a(b)(3) as follows:

  • To the National Coordinating Center for the purpose of obtaining insurance coverage for the donor selected to provide cells for a clinical transplant. Information released will consist of name, address, Social Security Number and date of birth. Name and address only for the purpose of direct informational mailing (in such a way that the individual is not linked to his or her donor identification number or HLA-type).
  • To a NMDP-approved civilian medical facility in only those cases where required medical examination and/or actual marrow or blood hematopoietic progenitor cell procurement is performed.

Note: This system of records contains individually identifiable health information. DoD 6025.18-R, "DoD Health Information Privacy Regulation" issued pursuant to the Health Insurance Portability and Accountability Act of 1996, applies to most such health information. DoD 6025.18-R may place additional procedural requirements on the uses and disclosures of such information beyond those found in the Privacy Act of 1974 or mentioned in this system of records notice.

POLICIES AND PRACTICES FOR STORING, RETRIEVING, ACCESSING, RETAINING, AND DISPOSING OF RECORDS IN THE SYSTEM:


STORAGE:

Records are maintained on paper in file folders and electronic storage media.

RETRIEVABILITY:

By donor's name, Social Security Number (SSN) or Donor Identification Number, HLA type, date of birth, gender and racial/ethnic group.

SAFEGUARDS:

Records are accessed by authorized personnel with an official need-to-know who have been trained for handling personally identifiable information. Hard copy records are maintained in locked cabinets in restricted access areas. Computer files are accessed on a password-protected stand-alone microcomputer system that includes a complete array of certified intrusion protection with computers housed in restricted areas with mechanical locks for additional protection. Computer files containing personal identifiers are maintained in a database server on an enclaved network using strict firewall rules for access and data files are maintained on a database encoded format that cannot be read without access through the secure database. Backup data containing personal identifiers are maintained in secure locked cabinets and the data is encrypted. Medical information required to facilitate the donation process is maintained on a local system developed as part of the National Marrow Donor Program; the database requires a second and third level of password protection for access by DoD Marrow Donor Program personnel with a need-to-know.

Specific permitted information (without personal identifiers) is transmitted to and received from the national coordinating center of the National Marrow Donor Program in a secure system to facilitate selection of donors for transplantation, and provide information about the progress of the donation process.

RETENTION AND DISPOSAL:

Pending. Until National Archives and Records Administration approves the retention and disposition schedule, treat records as permanent.

SYSTEM MANAGER(S) AND ADDRESS:

Assistant Secretary of Defense (Health Affairs), Office of Professional Affairs and Quality Assurance, Room 3D366, 1200 Defense Pentagon, Washington, DC 20301-1200.

NOTIFICATION PROCEDURE:

Individuals seeking to determine whether information about themselves is contained in this system should address written inquiries to the Assistant Secretary of Defense (Health Affairs), Office of Professional Affairs and Quality Assurance, Room 3D366, 1200 Defense Pentagon, Washington, DC 20301-1200, where a log of these requests will be maintained.

Individuals may also determine if they are included by contacting the Donor Center of the C. W. Bill Young Marrow Donor Recruitment and Research Program, the DoD Bone Marrow Donor Program, 11333 Woodglen Drive, Rockville MD 20852-3071.

The request should contain the individual's full name, Social Security number (SSN), and, if applicable, the name of the medical facility where examinations, tests, bone marrow collection, and follow-up procedures were conducted.

RECORD ACCESS PROCEDURES:

Individuals seeking access to information about themselves contained in this system should address written inquiries to the OSD/JS FOIA Requester Service Center, 1155 Defense Pentagon, Washington, D.C. 20301-1155.

The request should contain the individual's full name, Social Security number (SSN), and, if applicable, the name of the medical facility where examinations, tests, bone marrow collection, and follow-up procedures were conducted.

CONTESTING RECORD PROCEDURES:

The OSD rules for accessing records, for contesting contents and appealing initial agency determinations are published in OSD Administrative Instruction 81; 32 CFR Part 311; or may be obtained from the system manager.

RECORD SOURCE CATEGORIES:

Information is obtained from record subjects and attending medical specialists.

EXEMPTIONS CLAIMED FOR THE SYSTEM:

None.

FEDERAL REGISTER HISTORY:

February 10, 2009, 74 FR 6584; November 18, 2013, 78 FR 69076