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Thanks to the Human Genome Project and billions of dollars spent in the private sector, we are acquiring vast information about the role genes play in diseases that can probably kill you. It is time to start using these data to expand the benefits already bestowed by genetic tests.
Today, health insurers and HMOs cover the cost of some genetic tests, especially those that can diagnose the hundreds of disorders (such as cystic fibrosis and muscular dystrophy) caused by mutations in a single gene. Many are reluctant, however, to pay for genetic tests that can identify persons at increased risk for such disorders as colon cancer and heart disease.
Why? Over the last two decades, fears of genetic discrimination have hobbled the field of genetic testing. Clinical geneticists and consumer groups have speculated that insurers will misuse the risk data. Further, insurers, doctors, and consumers haven’t learned enough about genetic testing to understand that many of the new tests are really much like a cholesterol count—not diagnostic but rather a source of information that can be used to modify risk.
First developed for phenylketonuria (a disorder that causes severe mental retardation unless infants are quickly put on a special diet) in 1962, newborn screening is provided to almost every baby in America for some 20 genetic disorders. The tests cost little and save lives by enabling diagnosis of rare disorders early to avert disaster.
Carrier testing (which identifies healthy couples at risk of conceiving a child with a severe disease) has greatly reduced the births of babies with Tay-Sachs disease. At-risk couples can seek testing and terminate affected pregnancies or consider adopting children. A few years ago a group at the National Institutes of Health recommended offering carrier testing for the gene responsible for cystic fibrosis, and the number of tests soared. Prenatal screening offers couples the option of looking for serious birth defects in the fetus. Insurance companies and HMOs routinely cover these tests.
Soon genetic tests will determine proper dosage of powerful drugs like blood thinners and antidepressants. Genetic factors influence risk for heart disease, diabetes, and Alzheimer’s disease. In the case of Alzheimer’s, there is at least one gene variant found in about 3% of the population that greatly increases the risk for the disease. Shouldn’t you have the right to know whether you are among the 3%?
Insurers have no grounds to argue that threats of genetic discrimination make the information too sensitive to acquire. The amount of documented discrimination is smaller than minuscule. Further, almost every state has a law that protects against misuse.
Third-party payers should embrace genetic information. Living to your fullest means pursuing a healthful life style, which you can do, and managing your genetic risks, which you can do only if you have been tested.
Instead of asking whether health insurance companies should cover genetic tests, let’s ask what exactly they would be covering if they did. Looking beyond the marketing and into the science, we’ll see that genetic testing is hardly as definitive as often assumed, making it difficult to use for preventative medicine.
Not long ago, we were told that learned men and women in lab coats would be able to look into our biological future, using DNA as a crystal ball. But after more research, we’re finding that DNA is not absolute. Rather, it works by probabilities and potentialities, and is affected by the environment outside of our cells. The promised crystal ball actually looks more like a murky lake.
During genetic tests, technicians look for markers that may indicate a presence of mutated genes associated with an illness. Then they can theorize about the likelihood that the medical problem will develop. For patients with long family histories of particular cancers, insurance company guidelines recommend paying for the tests because their results have proven more certain. Less clear-cut cases, on the other hand, mean too few actionable takeaways, too much ambiguity, and too little benefit to the patient to justify covering a test.
Just because a lab detects a marker for a potential condition doesn’t mean that the condition will manifest itself. Likewise, a clean test doesn’t mean that the genome is pristine. Epigenetic processes responsible for gene expression and silencing may yet activate a cancerous gene or silence a potentially troublesome one, turning the results of the genetic test on their head. What if patients want to take costly preventative measures against diseases that may never manifest themselves? Or spend years and financial resources preventing possible illnesses—just to develop something completely different?
If insurance covers these preventative efforts, how much money has the insurer spent on fighting the phantoms of patients’ concerns? And how much did premiums have to rise to cover all this preventative care based on conjecture? Insurers also worry that companies—wary of the expense ambiguous preventative procedures can entail—may decide not to cover employees based on results of genetic tests. Such genetic discrimination is bound to start court battles, taking a heavy toll on everyone involved.
We should not underestimate the difficulty of deciphering our genetic mechanisms. Until we learn enough to consistently predict potential conditions with 85% certainty or above and know how to effectively help prevent them, we’re asking insurers to spend money on a game of medical roulette and drive up our already high premiums.Opinions and conclusions expressed in the BusinessWeek.com Debate Room do not necessarily reflect the views of BusinessWeek, BusinessWeek.com, or The McGraw-Hill Companies.
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