A new study published in the February 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 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.
"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,
deputy director for public health at the
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
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 vs. individuals with other
serious medical conditions. Respondents (or their children)
had sickle cell disease, cystic fibrosis, breast cancer,
colon cancer, diabetes or HIV.
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 also were 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 the individuals in the study (89.7 percent)
said they obtained their health insurance through either
their employer (59.4 percent) or their spouse's 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 also were 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 (68 percent vs. 49 percent overall) to believe that
health-care 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, and the Health Insurance Portability and
Accountability Act 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. Individuals can be denied
coverage, however, if they have symptoms of genetic
disease; HIPAA therefore 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," Kass
said. "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.
The new study is one of the first large-scale research
projects to gather systematic data from individuals
documenting their actual experiences. The project was
supported by a grant from the National Institute for Human
Genome Research, National Institutes of Health. Study
participants enrolled from March 1996 to February 2000 and
ranged in age from 18 to 64. The project team included
researchers from the Johns Hopkins Berman Institute of
Bioethics, Johns Hopkins Bloomberg School of Public Health,
Cleveland Clinic Foundation, National Institutes of Health
and Georgetown University.