The Social Security Public Death Master File (DMF) has served as a valuable source of data for medical researchers, providing information critical for long-term survival and epidemiological studies. The DMF includes death records received by the Social Security Administration (SSA) from families, hospitals, funeral homes and financial institutions dating from 1936 to the present. Since 2002, the DMF has also included death records supplied by state governments, which constitute approximately 35% of the newest death records located in the DMF. However, as of November 1, 2011, the SSA no longer discloses state-supplied death records in the public version of the DMF. Because state records constitute such a large portion of the most current and relevant data in the DMF, the loss of this affordable database of death records has substantial negative implications for medical researchers and other groups who rely on the data for financial and research purposes. The American Association for Thoracic Surgery (AATS) has been working with other specialty societies to advocate for restored access to the full DMF for medical researchers.

Importance of the DMF to Medical Research

The DMF is a popular research tool because it is updated weekly and the full DMF file plus weekly updates can cost as little as $8,500 annually. The Center for Disease Control and Prevention (CDC) keeps a more complete record of deaths, but the CDC database is only updated annually and can cost much more than the DMF to use for larger studies because the cost of use increases with the number of individuals searched. Therefore, the DMF is an important and affordable, though incomplete, source of data for medical researchers and practitioners, as well as members of the financial services industry and individuals performing genealogical research.

Medical researchers use the DMF to track the mortality rates of organ transplant recipients, monitor the survival rates of participants in long-term research studies, and evaluate the safety and effectiveness of various procedures and medical devices by comparing survival outcomes. The DMF is particularly useful in helping researchers track subjects who have moved and cannot be located or who have continued treatment in different institutions. Additionally, because the DMF includes the age, location, and other demographic data of decedents, researchers can study the effect of these variables on mortality outcomes. Without such information, these subjects would not be included in research results, affecting the comprehensiveness and accuracy of the studies.

According to the National Technical Information Service (NTIS), the government agency responsible for managing access to the DMF, insurance companies, fraud prevention companies, and financial institutions use the DMF to ensure the accuracy and legitimacy of various transactions. For example, insurance companies regularly check the DMF to confirm that insurance or annuity beneficiaries are still living. Recently, the New York Department of Financial Services ordered life insurance companies to search the DMF for names of policyholders to help ensure that beneficiaries unaware of the policy would be paid.

Additionally, according to the NTIS, the DMF is used to prevent identity fraud by financial services providers, government entities and fraud prevention services. By comparing the personal information supplied by an applicant against the information provided in the DMF, these institutions can ensure that applicants for government services or credit cards, for example, are not fraudulently using the personal information of a deceased individual.

Finally, professional and amateur genealogists use data from the DMF to create family trees and study family health histories. According to the Records Preservation and Access Committee, a coalition of various genealogical societies, genealogists must have access to the Social Security numbers of decedents to make certain that they have identified the correct decedent in their research. Particularly when genealogical research involves locating information about a decedent with a common name, accessing death records connected to a Social Security number is necessary for accurate research.

Improper Uses of the DMF: Identity Theft and Incorrect Death Reporting

Because the DMF includes a decedent’s full Social Security number, its role in facilitating identity theft has become an issue of increasing concern to the SSA, Congress, and consumer advocacy groups. Witnesses in a Congressional hearing on the DMF held in February reported that identity thieves are using the personal information of deceased children listed in the DMF to file false tax returns by listing the child as a dependent.

CNN Money reports that identity thieves use the personal information of over two million deceased Americans per year for purposes of opening bank and credit card accounts. Although the number of these identity thefts resulting from the use of DMF data specifically has not yet been studied, the potential for abuse by users of the DMF has contributed to the current and proposed restrictions to DMF data accessibility.

In addition to concerns regarding the publication of personal information of deceased individuals, members of Congress and consumer protection groups are also concerned about the publication of personal information of living people mistakenly placed on the DMF. According to the SSA, the names and personal information of over 14,000 living people per year are accidently placed in the DMF. In addition to the risks associated with having such personal information publically available, being listed in the DMF can have severe financial implications.

Because fraud prevention services use the DMF to cross-check accounts and applications to ensure that a criminal is not fraudulently using a deceased person’s identity, individuals listed may not be able to apply for a loan or open bank accounts, or may have their accounts closed, resulting in months of inconvenience until the SSA corrects the mistake. Due to the increasing rate of identity theft and the relative ease of finding information from the DMF on the Internet, consumer protection advocates concerned with the amount of personal information listed have argued that the risks of the public availability of such information justify eliminating public access to the DMF entirely.

Changes in Access to the DMF

In 1980, a court-mandated settlement required the SSA to disclose information from all of the death records it received, including the Social Security numbers, names, birthdays, and dates of death of the decedents. In 1983, however, Congress amended the statutes governing the SSA to exempt state death records from the public disclosure requirement, while continuing to allow the SSA to share the data with other governmental agencies. Despite the 1983 legislation exempting such records from required public disclosure, the SSA publicly reported information received from state death records beginning in 2002. However, due to controversy surrounding incorrect death reports in the DMF and identity thefts arising from personal information allegedly gathered from the DMF, the SSA concluded last year that it could no longer disclose death records obtained from state governments. According to a recent New York Times article, as a result of this decision four million entries were removed from the DMF and the number of new entries per year is expected to drop by approximately 35% compared to the amount of 2010 records.

Since 2011, several bills have been introduced in Congress to further restrict access to the DMF. Last year, Representative Samuel Johnson (R-TX) proposed new legislation, the Keeping IDs Safe Act of 2011 (H.R. 3475), that would limit the use of all DMF data to law enforcement, tax administration, and federal and state agency research purposes only. Senator Bill Nelson (D-FL) included a provision in his proposed Identity Theft and Tax Fraud Prevention Act (S. 3432) that would forbid the SSA from disclosing any information in the DMF regarding a recently deceased individual in order to combat tax fraud.

Potential Solutions to Provide Medical Researchers Access to the DMF

By refusing to disclose state death records to appropriate users of the DMF, the SSA has failed to balance the valid concerns of protecting personal information with the need for researchers and other legitimate users to have access to information needed to efficiently track deceased individuals. As previously discussed, Representative Johnson’s proposed legislation goes even further than the recent SSA policy change, eliminating almost all public access to the DMF. According to Toby McIntosh from Bloomberg BNA, this past summer the SSA and various financial entities began discussions that would allow these groups to continue to access the DMF provided that they undertake various security measures to ensure the privacy of the data received. This form of "limited access" and imposition of security requirements on users could easily be extended to medical researchers. Likewise, the DMF limitations found in Senator Nelson’s proposed Identity Theft and Tax Fraud Prevention Act include an exception for "certified" users, defined as those users who need access to the DMF for the detection and prevention of fraud. AATS and other medical societies have urged Congress to recognize the importance of the full DMF data for medical research and include medical researchers in the groups permitted to access the full DMF. Both of these pieces of legislation can be amended to ensure that DMF data stays out of the hands of criminals while continuing to allow medical researchers access to this valuable database.

Please contact your local representative and senator to encourage them to support a medical research exception to any legislation that would restrict public access to the DMF. Legislation that imposes restrictions on public access to the DMF while including tailored exceptions for carefully screened and monitored users would address the potential for abusive use of the DMF, while permitting complete and timely access to those who rely on it for legitimate purposes.

Ms. Halpern is counsel at Hogan Lovells in Washington, D.C. and writes on medico-legal issues for the American Association for Thoracic Surgery.

Medical Researchers Need Access to The Social Security Death Master File