When the Human Genome Project officially began in 1990, the first social concern to generate widespread interest was the possibility that health insurance companies would use predictive genetic information to charge individuals higher rates or to exclude them from coverage. Both the public sentiment of strong opposition to such practices and the public policy response of enacting legislation prohibiting genetic discrimination in health insurance were easy to predict.
Although comprehensive federal bills to prohibit genetic discrimination in health insurance have languished in Congress, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) prohibits employer-sponsored group health plans from excluding from coverage, charging higher rates, or offering different benefits to members of a group based on their genotype (HIPAA 1996). In addition, all but a few states have enacted laws prohibiting genetic discrimination in health insurance, applicable mostly to individual policies and non employer groups.
As the policy focus has shifted to the possible role of genetic information in life insurance underwriting, it is important to consider public attitudes about a range of related questions. What does the public regard as the primary social function of life insurance? What is the proper role of underwriting in general? If individuals learn that they are at a genetically increased risk of developing a serious illness in the future, would this affect their decision to purchase life insurance or the amount of coverage? If individuals are concerned about genetic discrimination in life insurance, how does the level of concern compare with other social concerns? What, if any, legislative action would be appropriate to deal with the issue?
The chapter reports some of the key findings of the first comprehensive public survey on genetic information and life insurance underwriting. In general, the data lead to the following four conclusions:
(1) the public generally believes that life insurance companies would use genetic information to deny coverage or charge higher rates;
(2) individuals who learned that they were at a genetically increased risk of a serious illness would be more likely to buy all forms of insurance, but especially health and disability insurance;
(3) the likelihood of purchasing all forms of insurance on learning of a genetically increased risk is strongly correlated with age, with younger individuals most likely to be purchasers; and
(4) support for legislative limitations on the use of genetic information by life insurers is most correlated with education level, with people with the most education supporting such measures.
As with the policy analysis and legislative activity, public opinion research on genetics and insurance has concentrated on health insurance. Four data sources on public attitudes regarding genetics and life insurance, however, are worth exploring: a 2002 Harris poll, two empirical research studies on adverse selection in life insurance and data from an interview survey generated by our research team in 2001.
An interactive telephone survey of 1,013 adults was conducted between May 15 and 21, 2002 (Harris 2002). Among the questions asked was the following:
If you were given a genetic test which showed how likely you were to get one or more serious diseases, which of the following do you think should be allowed to see this information?
