The Medical Information Bureau Inc. (MIB Inc.) (a/k/a, MIB Group, Inc., a/k/a, MIB, Inc., a/k/a, MIB Solutions, Inc.) has been the subject of ongoing controversy since the 1970′s, when its existence first became generally known. Even today, the Medical Information is an unknown entity; most consumers, doctors, and even politicians, remain unaware of its existence.

The Medical Information Bureau has a penchant for secrecy. For many years, insurance agencies consulted MIB without telling applicants about the files. MIB even had an unlisted phone number. Today, the secret continues, if to a lesser extent: MIB won’t publish its list of corporate members or release the list of codes it uses. More importantly, the MIB refuses to provide a centralized, secure, online source for consumers to request, review, and dispute their medical report files.

The following article, “Nobody Knows the MIB” by, Simson Garfinkel is excerpted from Database Nation: The Death of Privacy in the 21st Century (2000):

“… As part of his Ph.D. thesis at Harvard Business School on privacy policies in corporate America, Jeff Smith surveyed more than a thousand people on a variety of privacy issues, and conducted in-depth interviews with several dozen. One of the key questions he asked was whether people had ever heard of a company called the Medical Information Bureau (MIB). What he found wasn’t terribly surprising: they hadn’t… I asked my wife if she knew what the Medical Information Bureau was. She said she didn’t. I then showed her a medical insurance she had filled out nearly two years before. It included these two paragraphs:

“I AUTHORIZE any physician, medical practitioner, hospital, clinic, other medical or medically-related facility, the Medical Information Bureau (MIB, Inc.), consumer reporting agency, insurance or reinsurance, employer having certain information about me or my dependents to give John Alden Life Insurance Company or its legal representative any information. The nature of the information to be disclosed includes information about: (1) physical condition(s), (2) health history(ies), (3) avocation(s), (4) age(s), (5) occupation(s), and (6) personal characteristics.. This authorization includes information about: (1) drugs, (2) alcoholism, (3) or (4) communicable diseases.

I UNDERSTAND the information obtained by use of the Authorization be used by JOHN ALDEN LIFE INSURANCE COMPANY to determine eligibility for benefits. I ALSO AUTHORIZE JOHN ALDEN LIFE INSURANCE COMPANY to release any information obtained to reinsuring companies, Medical Information Bureau, Inc., or other persons or organizations performing business or legal services in connection with my application, claim, or as may be otherwise lawfully required, or as I may further advocate.”

“ls that your signature at the bottom of the form?” I asked her. Yes, it was. She then read the form again. Still, she had no real clue what the MIB was, other than that it was probably some kind of clearinghouse for medical information.

In fact, what the Medical Information Bureau keeps in its computers is information about people. Specifically, every time you report a significant medical condition on an insurance application—anything from heart problems to skin cancer—the insurance company can report that condition to the MIB. The next time you apply for insurance, your “new” insurance company will pull your MIB file and find out what you previously reported.

In theory, MIB is supposed to prevent people who have significant medical conditions (and have been repeatedly rejected when they apply for insurance) from suddenly omitting their conditions from their applications and then getting health and life insurance with low-cost premiums that are reserved for healthy people. MIB helps “keep the cost of insurance down for insurance companies and for consumers by preventing losses that would occur due to fraud or omissions,” says Neil Day, MIB’s president.

MIB isn’t supposed to be a medical blacklist. Member insurers are officially forbidden from using the information obtained in MIB’s files as the basis for denying insurance. Instead, they are only allowed to use the information as the basis for further investigation. At least, those are the rules.

MIB was organized in 1902 as a non-profit trade organization; today, MIB is registered as a not-for-profit trade association and roughly 750 insurance companies subscribe to its membership. MIB’s files don’t contain medical records, test results, or X-rays. Instead, each person’s file contains one or more codes that stand for a particular medical condition that has been reported for that person. There are codes that signify diabetes, heart problems, and drug use. Some codes are very detailed. For examples, Jeff Smith found that MIB had five codes for AIDS.

Not all of the codes at the Medical Information Bureau are medical Smith noted. For example, MIB has five codes that indicate a dangerous lifestyle, including, “adverse driving records, hazardous sports, aviation activity, or homosexual lifestyle” These codes map to similar question on most life insurance forms.

MIB is thus the official insurance agency gossip columnist. MIB helps make sure that if one life insurance company rejects a person on medical grounds, then other life insurance companies will be made aware of the ailment and reject that person.

MIB has been the subject of ongoing controversy since the 1970′s, when its existence first became generally known. At the root of the controversy is the organization’s penchant for secrecy. For many years, insurance agencies consulted MIB without telling applicants about the files. MIB even had an unlisted phone number. Today, the secret continues, if to a lesser extent: MIB won’t release the list of codes it uses.

In the past, says Privacy Journal publishers Robert Smith, MIB had codes that stood for “sexual deviance” and “sloppy appearance.” Neil Day disagrees, but since MIB won’t release the list of conditions for which it has created codes, there is really no way to know for sure.

There have also been disagreements over the accuracy of MIB’s files. The Fair Credit Reporting Act specifically exempts medical records, but the MIB agreed to be voluntarily bound by the rules after a 1983 examination by the Federal Trade Commission. Since then, MIB has received roughly 15,000 requests by individuals each year, says Neil Day. Between 250 and 300 patients per year argue with the content of their report, he says. Overall, “97% of all consumers who received their MIB report [in 1996] found that their MIB record was accurate,” reads a company pamphlet.

But if you happen to be one of those 300 patients, you might find yourself without medical or life insurance. In 1990, the Massachusetts Public Interest Research Group (MASSPIRG) did a study on MIB and found numerous cases in which erroneous records in the company’s files had prevented people from getting insurance. In one case, says Josh Kratka, a MASSPIRG attorney, a Massachusetts man told his insurance company that he had been an alcoholic but had managed to remain sober for several years and that he regularly attended Alcoholics Anonymous. The insurance company denied him coverage and forwarded a code to MIB: “alcohol abuse; dangerous to health.” The next company the man applied to for insurance learned of the “alcohol abuse” through the Medical Information Bureau and charged the man a 25% higher rate…”

Reprinted in Information Privacy Law (2nd Edition); edited by Paul M. Schwartz, Marc Rotenberg, and Daniel J. Solove.

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