Johns Hopkins Berman Institute of Bioethics
February 12, 2007
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.
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.
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 spouseĆ¢ā¬ā¢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.
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 Ć¢ā¬Åpre-existing condition in the absence of the diagnosis of the condition related to such information.Ć¢ā¬Ā 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.
And…
Genetic anti-bias bill is back
By Doug Trapp
American Medical News
February 19, 2007
The seventh time may be the charm for backers of a bill to ban genetic discrimination in health insurance plans and the workplace.
The Genetic Information Nondiscrimination Act (HR 493) would make it illegal for insurers to deny coverage to a healthy individual based solely on a genetic predisposition to a specific disease and for employers to use individuals’ genetic information in personnel decisions.
President Bush also supports the measure.
The U.S. Chamber of Commerce has been a key opponent of the bill because the organization feels it goes too far, according to Michael Eastman, executive director for labor policy.
Employers shouldn’t have to face potential compensatory and punitive damages for accidental disclosures of genetic information.
“Ultimately, it will be difficult to separate genetic information from medical information,” Eastman said.
http://www.ama-assn.org/amednews/2007/02/19/gvsa0219.htm
Comment:
By Don McCanne, MD
Should genetic information ever be used to deny an otherwise healthy person health care coverage? Should actual genetic disease ever be used to deny a person health care coverage? Is there any reason at all to separate genetic information from medical information in making decisions about health care coverage?
Although the Genetic Information Nondiscrimination Act certainly should be supported, shouldn’t we also be supporting legislation that would ensure that everyone has genuinely effective health care coverage?
At this pace of incremental reform, global warming will get us before we can ever hope for comprehensive health reform.