Opinions on Possible Regulation of Life Insurers' Use of Genetic Information

Elected officials, executives of the life insurance industry, academics, consumer advocates, and numerous other individuals have begun searching for an appropriate response to the issue of genetic information and life insurance underwriting. We attempted to identify public opinion about various policy options. The immediate options available to life insurance companies are to acquire relevant genetic information from an applicant's medical record, or to require someone applying for a policy to take a specific genetic test or a battery of tests to determine risk of life threatening disease. To explore beliefs about what the population thinks is appropriate genetic information that an insurance company should be allowed to obtain, we asked:
Now I am going to read some general statements about life insurance and genetic testing and ask whether you agree, disagree, or have no opinion. The first is:
a) Life insurance companies should be allowed to require all applicants to
a genetic test.
b). Life insurance companies should not be allowed to use either the results of genetic tests or other genetic information.

c). Life insurance companies should be able to use genetic information from existing medical records, but they should not be allowed to require applicants to take a genetic test.
The order in which the three parts of the question were asked was rotated. The answer options were agree, no opinion, disagree, and unsure; refusals also were noted.
Most respondents (60.8%) said that life insurance companies should not be permitted to use either the results of genetic tests or other genetic information. Most (53.2 %) said that companies should be able to use genetic information from existing medical records, but they should not be allowed to require applicants to take a genetic test. Only 15.4% agreed with the statement that companies should be allowed to require all applicants to take a genetic test. Whites (12.4%) were least likely to say that companies should be allowed to require applicants to take a genetic test and most likely (55.6%) to say that companies should be allowed to use existing information.
Between 25% and 30% of respondents less than twenty-four and over seventy-five years of age were most likely to approve of required genetic testing. Socioeconomic status characteristics also appear to be important determinants of attitudes. More than 20% of the lowest-income group said that insurance companies ought to be allowed to require applicants to have a genetic test, but only about 8% of the highest-income group had that opinion. Similarly, between 25% and 30% of respondent who did not complete high school approved of life insurance companies requiring genetic tests, compared with less than 10% of respondents who had a college or graduate degree. When it came to using existing genetic information from an applicant's medical record, clear differences of opinion were seen by education, but less clear difference by economic status. Respondents with the least education were least likely to say that companies ought to be allowed to use existing information. In contrast, groups with the highest education were twice as likely to allow companies access to existing information.

What is interesting to note is that the lowest-education group, those with less than an elementary education and who presumably had the least understanding of genetic testing and genetic information and what they can be used for, did not seem to distinguish between the implications of requiring a test and using existing information. However, as education level increased, respondents were more likely to oppose required genetic tests but would permit use of genetic information that might already exist.

We asked individuals if they ever had a genetic test, and those who had not had a genetic test were most likely to oppose allowing life insurance companies to require -,such tests. Although it is not clear what is responsible for this result, it may be that it reflects negative test results or individuals who had declined testing because of possible non-medical uses of the information. It also should be noted that only 8.1 % of respondents reported having had a genetic test.

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