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  Ethics Matters

Genetic Testing and Insurance

by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

Insurance is a business that depends on predicting health risks and setting premiums to account for them, and so insurers are very likely to be interested in genetic testing for individuals. The question is whether and under what conditions genetic testing ought to be allowed.

Center for Bioethics

What's your opinion?
"Genetic Testing and Insurance" is the second part of an on-going series on genetics issues.
Part 1:Genetic Testing: The Future is Here

Setting premiums by predicting risk

The insurance business attempts to set premiums at levels that allow payment for all legitimate claims with money left over every year as profit. To do this, insurance companies do their best to understand the costs they will bear if they agree to cover individuals who will make up the group whose risks are pooled.

Health, disability and life insurance offer protection from the real costs of health care, premature death, and disability by collecting premiums from many people but paying large claims on only a few. Premiums are set using information about individual's health, lifestyle, family history, and diagnostic tests for everything from drug screening and heart monitoring to HIV tests. Genetic testing may add to the predictive information available to insurers, but at what costs both to them and to those they insure?

Genetic testing is expensive, and in most cases can only provide limited information about the risk of disease since there are so many factors -- genetic and otherwise -- that determine who will get sick, and when. And it can be used to determine access to insurance or to justify increased premiums, which may result in necessary coverage being denied to individuals and their families.

Protecting access to health insurance

Because of the importance of health insurance, almost half the states and a recent federal law now bar large health insurers from using genetic testing to discriminate against individuals because they may develop a disease in the future. The argument is that health insurance is so important that it should be treated as a community resource, with individuals' risk shared across the pool of all who are covered. It makes sense to treat health insurance in this way because of the special nature of health care. But what about life and disability insurance?

Life and disability insurance can be seen as optional as compared to health insurance, and so we might be more willing to treat them differently. But if genetic testing were used to deny insurance or to set very high premiums for death or disability caused by the predicted disease, then it hardly makes sense to buy coverage. The irony is that insurance would be denied for just the possibility that insurance is meant to cover -- the likelihood of premature death or disability.

Singled out by science

Even so, using genetic testing to distinguish individuals might make sense if it were really able to single out those truly at greater genetic risk. In fact we all carry some assortment of genetic defects, but for most of us science has yet to discover our particular defects or tests to identify them. Since genetic tests are available for only a fraction of the diseases that likely have at least a genetic component, it is unfair to single out those people affected by the few diseases for which we now can test.

Until a critical mass of genetic information has been discovered, and tests to assess it have been developed, it is unfair to allow the inequitable use of genetic testing to decide who should have access to insurance and what its costs should be.

Should insurance companies be allowed to use genetic testing to determine eligibility for insurance and/or to set premiums?
Post your opinion here.

Visit the "Ethics Matters" Archive where you'll find other columns from Jeffrey Kahn on a wide range of bioethics topics.

"Ethics Matters" is a bi-monthly feature from the
Center for Bioethics and CNN Interactive.

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