NCPA - National Center for Policy Analysis


February 16, 2007

People with genetic conditions reported they are twice as likely to be denied health insurance coverage or be offered coverage that is prohibitively expensive compared with others with pre-existing conditions, according to a study by researchers at Johns Hopkins University, published in the February issue of the American Journal of Medical Genetics.

Other findings:

  • Some 23.5 percent of individuals with genetic conditions indicated their coverage had been limited compared with 14.2 percent of individuals with other conditions.
  • For all survey respondents, regardless of medical condition, a clear majority (nearly 59 percent) indicated that it was likely an insurance company could obtain their personal healthcare information without their permission and 71 percent indicated an insurance company could access their healthcare information without their knowledge, according to the study.
  • Also, 67 percent of respondents indicated there was a "high chance," and another 21 percent answered there was a "medium chance" that their health insurance company could get medical information about them "from some computerized record" without them ever knowing.
  • Further, 73 percent of respondents agreed that doctors should be punished if they released medical information to an insurance company without the patient's permission.
  • About 3 percent of respondents admitted to withholding information from insurance companies, with HIV patients (8.8 percent) being the most likely to do so, but that was not the extent of their privacy-protecting behaviors, according to the study.

The report concluded that, "future policy proposals should be broad-based and address the needs and concerns not only of those with obviously genetic conditions but those with other types of medical conditions as well."

Source: Joseph Conn, "Genetic conditions limit, deny health insurance: study," Modern Healthcare Online, February 15, 2007.

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