Insurance woes shadow genetic testing advances
Fear, anxiety about results supercede advances
Almost with each passing day, researchers are identifying genetic traits with strong links to the development of disease. Screening tests that identify these genetic mutations allow hundreds of thousands of people to seek more frequent screening and adopt preventive measures that may save their lives.
However, as groups of people are identified to be at higher risk for certain types of diseases, they face a more formidable challenge. Patients identified as having a higher risk of developing disease can experience genetic discrimination and the possible inability to obtain adequate health, disability, and life insurance.
Ethics committees also face a great challenge in the genetic testing realm. Aside from ensuring that patients receive fair treatment, they must make sure patients are fully informed of the benefits and risks associated with the testing and counseling process. But most importantly, ethicists and counselors must assure patients that information will indeed remain confidential.
Consider the most recent advances to receive national media attention. Tests indicating the presence of BRAC1 and BRAC2 mutations - indicating a significantly higher risk of developing breast and ovarian cancer in women - are now widely available. And just last month, scientists announced they may have isolated another genetic anomaly, APC, that may function as an additional indicator of breast cancer risk. In addition, scientists are beginning to develop gene-based treatments that work with the person's genetic makeup to treat and/or prevent disease.
Many experts contend, however, that public policy and regulation have lagged behind advances in science. This disparity is now beginning to show.
A recent study by the National Institutes of Health found that 32% of women sought as participants in a study of genetic breast cancer testing declined due to privacy concerns.
A 1995 Harris poll of the general public found that more than 85% of respondents indicated they were very concerned or somewhat concerned that insurers or employers might have access to and use of genetic information.
A 1997 national telephone survey of more than 1,000 people found that 63% of participants would not take genetic tests for diseases if health insurers or employers had access to the results.
Life, disability insurance are big concerns
The Health Insurance Portability and Account ability Act passed in 1996 prohibits large health insurers (those who insure 50 or more lives) from considering genetic information as a "pre-existing condition." But that protection does not extend to people who are self-insured or to life and disability insurance policies, says Jeffrey Kahn, PhD, MPH, director of the Center for Bioethics at the Unive rsity of Minnesota. Also, it doesn't mean these insurers don't have access to the information, he adds.
"Understand that we have no federal protections on who has access to genetic information and how it should be stored," he explains. "There may be state laws, but that [protection] is going to vary from state to state."
Even if health insurers are prevented from considering genetic markers for risk rating, once that information is in the medical record or insurance record, it is not really private anymore, he says. "It is very easy to get access to people's medi cal records, whether it should be or not."There haven't been many documented cases of genetic cancer discrimination mainly because insurers don't yet know how accurate, for their purposes, those tests are going to be, Kahn says. "At this point, the information is just not good enough. It's not only information about increased risk, it's probabilistic information about increased risk."
In the future, however, he predicts insurers are going to want that genetic information.
"I don't know how recently you have been worked up for life insurance, but they really want to know a lot about your life. They take blood and test for everything from HIV to levels of nicotine and do a toxicology screen to see if you do illicit drugs. They want information about how risky a lifestyle you have and whether or not you know things about your health that will affect how much insurance you buy."
If you don't provide prospective insurers with a blood sample, they simply can refuse to insure you, Kahn says. But once they get information about you, it often goes into a database known as the Medical Information Bureau. This database is shared by and paid for by insurers, he says. "It's a large database that only insurers have access to; they share information, more or less." Individuals don't have access to this database, not even to obtain information about themselves, he adds.
No firm legal ground
There have been documented cases of insurers who had prospective enrollees' blood-tested for HIV, the tests came back positive, and the people were denied coverage - without advising them of the reason. "They are not required to give a reason, they simply said we aren't offering you coverage," says Kahn. "In a few cases, patients grew seriously ill, and some died without learning their diagnosis." It is this eventual indiscriminate dissemination of information - without guarantees of patient access or control - he fears.
Insurers use the database and pre-enrollment screenings to guard against "adverse selection," Kahn explains. If people knew about pre-existing conditions or circumstances that would affect their health, they might try to "game the system" and purchase more insurance at a lower premium than they would get normally. "They [the insurers] understandably want to prevent that from happening," he says.
However, it is not fair that, due to scientific advances so far, certain people are being singled out for negative treatment, Kahn argues. "There may be lots of other types of cancer out there with genetic components. I'm sure there are, but we just don't know about them yet.
"Is it fair for insurers, who basically make educated guesses about their cost risks, to treat people differently who have tested positive for a genetic predisposition we happen to know about?"
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