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A new study published in the February 2007 issue of the American Journal of Medical Genetics reveals that individuals with genetic conditions are twice as likely to report having been denied health insurance than individuals with other chronic illnesses.

The Johns Hopkins University study also found that nearly 60 percent of all study participants believe a health insurance company can obtain medical information about them without their permission. Researchers conducted in-depth, personal interviews of 597 adults for the project, believed to be the first large-scale study to systematically compare and contrast the health insurance experiences, attitudes, and beliefs of persons with genetic conditions versus individuals with other serious medical conditions. Respondents (or their children) had sickle cell disease, cystic fibrosis, breast cancer, colon cancer, diabetes, or HIV.

"Anyone with chronic medical conditions should be legitimately concerned about access to health insurance, but individuals with genetic conditions may have additional reasons to worry," said principal investigator Nancy Kass, ScD, deputy director for public health at the Johns Hopkins Berman Institute of Bioethics and a professor at the Johns Hopkins Bloomberg School of Public Health. "We learned that there is considerable concern about being denied health insurance because of a genetic condition, as well as maintaining some privacy about the status of that condition."

In the study, more than a quarter (27 percent) of individuals with genetic conditions and serious medical conditions reported having been denied health insurance or offered it at a prohibitive rate. Further, those with genetic conditions were twice as likely to report having been denied health insurance or offered it at a prohibitive rate than individuals with other medical conditions. Individuals with genetic conditions were also more likely to report that their insurance company had limited the coverage related specifically to their condition than did individuals interviewed who had other types of medical conditions (23.5 percent vs. 14.2 percent).

Almost all of the individuals in the study (89.7 percent) said they obtained their health insurance through either their employer (59.4 percent) or their spouses employer (30.8 percent). Nearly half of employed individuals (48.9 percent) said they felt they could not leave their jobs because they would lose their health insurance. Individuals with genetic conditions were also more likely to report trying to obtain additional health insurance compared to individuals with other serious medical conditions. Only 67.2 percent of these individuals reported success in obtaining additional health insurance.

In other findings, individuals with HIV were most likely to believe that (68 percent vs. 49 percent overall) that healthcare providers would not send specific test results to health insurance companies if asked not to.

At the federal level, the Americans with Disabilities Act proscribes discrimination against persons with disabilities which includes those with genetically-related conditions. The Health Insurance Portability and Accountability Act (HIPAA) expressly forbids a group health insurance plan from using genetic information to establish rules for eligibility or continued eligibility. HIPAA also prohibits insurance companies from treating genetic information as a "pre-existing condition in the absence of the diagnosis of the condition related to such information." Individuals cannot be denied health care coverage for a medical condition as a result of a genetic marker for the condition. However, individuals can be denied if they have symptoms of genetic disease. As such, HIPAA provides no protection for the vast majority of respondents in the new study.

"As we spoke to family after family, it became clear that people with all types of medical conditions are quite worried about access to health insurance and make life changes in order to preserve their access to it," added Kass. "But people with genetic conditions may face additional challenges, an area that is worth further examination. Bioethicists are problem-finders, and we found a big one."

For purposes of the study, the research team identified individuals with single genetic disorders as having either cystic fibrosis or sickle cell disease. Individuals classified in the study as having other chronic illnesses were persons with diabetes, HIV, breast cancer, or colon cancer. A small number of individuals with a strong family history of breast cancer or colon cancer were considered "at risk," and were also classified as persons with chronic illnesses.