Us Legislative Background

The importance of coercion, control, and consequence in the insurance context is evidenced by the recent flurry of state legislation regarding genetic testing. As of mid-1996, at least sixteen states had such laws (Andrews, 1997; Holmes, 1996/97). The statutes vary in the extent to which they address health disability, and/or life insurance and whether they consider genetic testing in general or tests for particular diseases (e.g., sickle-cell anemia). Nevertheless, they all address one or more issues of coercion, control, and/or consequence.

Ten state laws have addressed some aspect of the nexus between genetic testing and life insurance. Five of these laws address genetic testing generally, while the remaining five focus on a narrow set of diseases. Coercion has been addressed in several state laws that bar insurers from requiring genetic tests. In May, 1997, Arizona's governor signed a new law that, in addition to other provisions, precludes insurers from requiring genetic testing as a condition of coverage (Schmidt, 1997). A 1996 Minnesota law has a similar prohibition, while a 1996 New jersey law allows life insurers to require genetic tests but only with notification and consent.

Other state laws address control issues regarding who may have access to genetic test results and under what conditions. A 1994 Florida law, for instance, describes genetic results as the "exclusive property of the person tested." In October, 1995, California's governor signed a law that recognizes a right to privacy regarding genetic testing and forbids the disclosure of test results. A Colorado law addressing health, disability, and long-term care insurance describes genetic testing information as "confidential and privileged." This information can only be released after specific written consent.

The potential consequences of genetic testing are addressed in state laws more often than either coercion or control. Virtually all state laws ban as unfair the use of genetic information in health insurance decisions, and several state statutes prohibit life insurers from denying coverage or charging excessive rates based on genetic test results. Yet, several state laws (e.g., Arizona and Montana) allow the use of genetic test results in life insurance decisions as long as there is a sound actuarial basis for the practice.

Discrimination has been the primary focus of recent federal legislation involving genetic testing. The Health Insurance Portability Act of 1996 prevents insurance companies from charging higher premiums or denying coverage to people because of their genetic history, although the restriction applies only to people enrolled in group health insurance plans, and it doesn't prevent insurance companies from raising rates for entire groups. Current legislation sponsored by Louise Slaughter in the House of Representatives and Olympia Snowe in the Senate could address potential discrimination by life insurers as well. In July, 1997, President Clinton expressed support for this legislation when he stated, "It's wrong when someone avoids taking a test that could save a life just because they're afraid the genetic information will be used against them ("Clinton Fighting Bias...," 1997).

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