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Roadblock for researchers: Social Security death record limits

Posting in Cancer

Last year, the Social Security Administration boosted its efforts to protect against identity theft by limiting access to its death records.

An unintended consequence? Delays in research ranging from the financial industry to health care -- some of which are, ironically, aimed at protecting consumers from other kinds of fraud.

The New York Times reports that while researchers are trying to raise awareness of their problems and put pressure on Social Security to increase access, Congress is actually looking to further limit access to increase identity protections.

The Social Security Death Master File

This is not a fictional name. The Social Security Death Master File indexes 90 million deaths reported to the agency over 75 years, and it includes names, Social Security numbers and dates of death.

Though it's not 100% accurate, it is updated weekly, making it the most current record of deaths across the country. Another reason it is prized by researchers is that it is much less expensive than a similar record kept by the Centers for Disease Control and Prevention, which is more complete but 14 to 18 months out of date.

For the last decade, the master file included state records. But last year, after reports that identity thieves were utilizing these records, the Social Security Administration decided to stop releasing state records in the file.

The Times reports:

As a result, four million deaths were expunged from the publicly available master file last November. Social Security officials expect the number of deaths disclosed each year — 2.8 million were made public in 2010 — to decrease by one million.

Consequences for research

As a result, all kinds of research are being held up. For example:

  • A group looking into organ transplant survival rates must do extra work to see whether patients are still alive. That in turn backs up the federal agency running Medicare, which used the data to determine when programs were performing too poorly to continue to receive government funding.
  • Financial industries such as life insurance, banking and credit services are finding it more difficult to pinpoint identity thieves who steal the deceased's names and Social Security numbers.

Gary Chase, the senior project manager of Harvard's Nurses’ Health Study, a 36-year look at the prevalence of cancer among more than 200,000 women, told The Times the new policy had “thrown us back to the pre-Internet era, where you’d start looking in the phone book for someone with a similar name and sending out a bunch of letters.”

Greta Lee Splansky, the director of operations for the Framingham Heart Study, which has, over 60 years, looked at heart disease in three generations from the same time, said, “It just slows us down. It’s wasting research dollars.”

No pity

Mark Hinkle, a spokesman for the Social Security Administration, told the Times, “I don’t want to sound offensive, but our job is to administer the Social Security program, and administering a death list really isn’t in our core set of workloads.”

Similarly, Congress is unmoved: Both Representative Sam Johnson, Republican of Texas, and Senator Bill Nelson, Democrat of Florida, has proposed bills to limit (or, in the case of Johnson's bill, eliminate), the master file.

“The decades-old practice of publishing personal death information that anyone can buy needs to end,” Johnson said, “and now.”

Seems like they should be able to come up with some kind of compromise between making the records entirely public and making them accessible to legitimate researchers working on projects that have a greater good, no?

Related on SmartPlanet:

via: The New York Times

photo: 401(k) 2012/Flickr

— By on October 14, 2012, 9:55 AM PST

Laura Shin

Features Editor

Laura Shin has been published in The New York Times, The Wall Street Journal and The Los Angeles Times, and is currently a contributor at Forbes. Previously, she worked at Newsweek, the New York Times, Wall Street Journal and LearnVest. She holds degrees from Stanford University and Columbia University's Graduate School of Journalism. Follow her on Twitter. Disclosure