The Medical Information Bureau Inc. (MIB Inc.) 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. Interestingly, the Medical Information Bureau Inc. also has an extensive history of sexual curiosity about Americans.

Although the Medical Information Bureau Inc. (MIB, Inc.) owns the largest database of reported medical information in North America, MIB collects more than just medical information. Personal habits, occupations, and lifestyle choices are very important to the insurance company members of the Medical Information Bureau.

For example, MIB has 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 or physician questionnaires.

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.

But, MIB’s files don’t contain your exact 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. Within the MIB database, medical conditions are indicated through the use of more than 200 codes; commonly reported conditions include height and weight, blood pressure, EKG readings, and lab tests. There are codes that signify diabetes, heart problems, and gender. Some codes are very detailed. For example, researchers found that MIB had five separate codes for HIV / AIDS acquisition (presumptively to identify whether the source of infection was medical or sexual).

MIB isn’t supposed to be a medical blacklist. 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.

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 now.

1970’s and The Revelation of “Sexual Deviation” Data Files by MIB’s Executive Director

During hearings by the U.S. Senate Banking subcommittee on Consumer Credit in 1973, Senator William Proxmire, questioned Joseph C. Wilberding, executive director and general counsel of the Medical Information Bureau (MIB).

Mr. Wilberding testified that the individual consumer files collected and exchanged by MIB, “included data on sexual deviation, drug addiction, alcoholism.” Mr. Wilberding also testified that “applicants for health insurance policies were “not told” that medical information would be made available to the 700 companies that support the data bank, and insisted that applicants “shouldn’t be told.”

Prior to the passage of the Fair Credit Reporting Act, credit reporting companies attempted to document all manner of personal and private information. Often, these credit reports included the personal judgments of investigators laced with prejudice.

For example, “In 1972, a man in San Francisco discovered that a consumer report about him for a life insurance policy included the comment that he used ‘his hands in an effeminate manner, also talks in an effeminate manner.’”

Privacy Journal publisher Robert Ellis Smith investigated these routine invasions of privacy by the insurance credit reporting agencies and uncovered “countless reports [that] included the fact that a prospected insured was living ‘without benefit of wedlock.’” Moreover, Smith reported that “unverified rumors of homosexuality” were common.

1980’s and Life Insurance Industry Concern about Customers with HIV / AIDS Infections

In the 1980’s life and health insurance industry executives begin to grapple with the ramifications of the HIV / AIDS crisis. The disease, which was almost invariably fatal, raised a specter of claims on life and health policies that could have bankrupted insurance companies.

Yet the insurance industry faced a somber Catch-22. It knew that homosexuals and intravenous drug users had a higher probability of contracting the disease than others. And it had access to medical technology that enabled it to spot people who were more likely to develop AIDS. Those two factors gave the industry the ability to spot – and refuse insurance to – many people who had HIV / AIDS or may have contracted it down the road.

Gay activists protested that HIV / AIDS tests unfairly stigmatized people who got positive results. The activists were particularly concerned about the confidentiality of critical medical records compiled by insurance companies, which regularly exchange information through the Medical Information Bureau, a central clearinghouse. That concern could have easily spread to the heterosexual community as well, in the face of suggestions by the Centers for Disease Control for mandatory AIDS testing for all hospital patients and marriage applicants.

For their part, the insurance companies said the specter of huge claims is too great to take a chance. According to Barbara J. Lautzenheiser, a Hartford-based consultant to the insurance industry, studies show that a 34-year-old man with evidence of exposure to the AIDS virus is at least 26 times more likely to die within seven years than the average person. That is in contrast to a twice-as-high death rate for smokers, and four times for those with diabetes.

Thus, insurance companies insisted that without free rein to screen out potential carriers of the AIDS virus, they would have to raise premiums for everyone. Insurers insisted it was not a case of discrimination against homosexuals, noting that they rejected or charged higher premiums to insurance applicants on the basis of such health and life style factors as high blood pressure and smoking. “We should be able to deal with AIDS the same way we deal with any other disease,” said Dr. Robert Gleeson, associate medical director for the Northwestern Mutual Life Insurance Company.

1990’s and The Introduction of Genetic Testing Results to Insurance Underwriting

In the 1990’s, consumers became worried about the prospects of genetic testing and insurance company discrimination. Dr. Paul Billings, a medical ethicist at Pacific Presbyterian Medical Center in San Francisco, who collected case reports of genetic discrimination from around the country, said he was not encouraged by what he had found.

For example, a young woman from Texas whose doctor noted in her records that her mother might have died of Huntington’s disease, an inherited degenerative brain disorder, was turned down for life and disability insurance even though her mother’s condition was never diagnosed. In some cases, insurers reversed their decisions once patients threatened legal action or asked for written statements as to why they were refused coverage, Dr. Billings said. But many people accept the insurer’s decisions as irreversible, he said.

Dr. Billings said the Medical Information Bureau in Weston, Mass., kept medical records for 15 million Americans, most of the information gleaned from insurance applications and physician records on patients. The company has existed for decades, but with the advent of computers it has established elaborate files on millions of people.

Dr. Billings said the practice of doctors’ furnishing medical records to insurers, based on authorizations in insurance application forms, threatened the whole notion of patient-doctor confidentiality. Insurance companies do not want to be in the business of genetic testing, said Donald B. White, a spokesman for the Health Insurance Association of America in Washington. But he said insurers should have access to genetic information so they could set fair rates for other policyholders.

Mr. White maintained that people with existing medical conditions should pay more for their coverage. But he said their conditions should not be used as an excuse to deny them health insurance. The problem of being denied health insurance primarily affects people who are self-employed or work for small businesses, Mr. White said. “This is not an acceptable situation,” he said of that problem, “and we as an industry are moving to change it.”

2000’s and Beyond – The Insurance Companies Remain Curious About the Sexual Activities of Customers

Overwhelming evidence demonstrates that MIB had codes that stood for sexual deviance, effeminate appearances and mannerisms, homosexuality, single mothers living alone (described as ‘women living without the benefit of wedlock), and HIV / AIDS acquisition. With the exponential advancement of modern genetic testing capabilities, activists are also concerned about the use of genetic information on sexuality to underwrite insurance policies for individuals or for their blood relatives.

To this day, the controversy surrounding MIB’s use of codes detailing sexuality activity and so-called “sexual deviance” continues. However, MIB steadfastly refuses to release the list of conditions for which it has created codes. So, consumers really have no way to know for sure how their sexuality affects their insurance prices.

To request a free copy of your annual file from the MIB, Inc. (Medical Information Bureau), complete one of the following options: (1) Call the MIB, Inc. toll-free telephone number at 1-866-692-6901 to make your request. OR, (2) Download this free MIB request form (PDF link). Then mail the completed and signed form to “MIB, Inc. 50 Braintree Hill Park, Suite 400, Braintree, MA 02184” to make your request.

“The MIB, Inc., and all insurance companies who are members of the MIB, will abide by the Fair Credit Reporting Act.” As a nationwide specialty consumer reporting agency, MIB Inc. “must provide a toll-free number that is published in every telephone directory in which a number for the company appears, and is clearly and prominently posted on the company’s website. In addition, federal law requires the company to have clear and easy instructions for consumers to get these reports, and adequate staff in place or means to deal with consumers’ requests.”

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