Medical Researchers Need Access to The Social Security Death Master File

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.