Counselors serve as confidants
Role is to inform patients of sensitive information
Though she says the fear of insurance discrimination against people with genetic cancer links often is exaggerated, Jennifer Graham does make sure her patients are aware of the sensitive nature of their genetic test results and suggests they take appropriate precautions. Graham is a genetic counselor at the James Cancer Hospital at The Ohio State University in Columbus.
For example, she often advises patients to consider obtaining additional life and/or disability insurance before undergoing genetic testing.
A person who obtains additional insurance within 12 months prior to undergoing genetic testing can keep the policy at the contracted premiums. A person who tried to obtain the policy later and withheld information about a genetic test result could be committing insurance fraud, says Graham.
"If the test is negative for a mutation, they can always cancel the policy later," she says.
Because the laws concerning the release of this information vary from state to state, facilities considering a genetic testing program must ensure their counselors are well-versed in the laws of their state. Ohio law prohibits health insurers from considering genetic test results in making coverage decisions and does not require patients to share this information with insurers, even when they pay for the test, she explains.
Many state laws, unfortunately, are not so protective. Many of her patients with adverse genetic test results also choose to ask their physicians not to write this information in their medical records.
"We caution patients about this all the time. Information recorded in the medical chart can be inadvertently sent to the insurance company," Graham says. Although in Ohio, insurers are prohibited from using genetic testing information even if they have it, if the information is sent to insurers, it is no longer a private matter between doctor and patient.
An Ohio task force on genetic discrimination risk, on which Graham served, found no cases of discrimination related to genetic cancer risk, she says. In most Ohio cases, she adds, health insurers have been willing to work with providers and patients to facilitate needed tests and follow-up treatment.
"Most insurance companies take the position that this testing affects only a small portion of their overall pool," she says. "In actuality, only 10% of cancers are inherited, and so only 10% - at most - of their members should appropriately be considering this testing."
Guidelines in the works
Companies are working with the hospital's genetic testing and research program to develop guidelines on who should be tested and when.
"If we feel, based on the guidelines, that it is appropriate for this person to be tested, they often do cover it. They don't expect to be informed of the results, but they are better about paying for increased preventive screening, like mammography [afterward]. It's really in their best interests for us to catch it earlier."
There is a lot of effort at the state and federal levels to develop comprehensive genetic privacy acts, says Jeffrey Kahn, PhD, MPH, director of the Center for Bioethics at the University of Minnesota.
Meanwhile, Kahn is unsure how safe any genetic information is. "Until that happens, no one knows the answer, for example, of whether your genetic information is something your employer has access to through your health insurer. Once your health insurer has it, what are they allowed to do with it?"
Laws that delineate who has access to an individual's genetic information and how that information is stored and maintained are urgently needed, he states.
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