Baltimore -- 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 t
Contact: Ed Bodensiek
Johns Hopkins University