The question has two interesting elements. First, it asked who should be able to see the information. Although it did not ask whether insurance companies, for example, should be able to use results of the genetic tests in deciding coverage or rates, a likely interpretation by many respondents was that having access to the information could lead to some (possibly adverse) action. Second, life insurance companies are the only entities on the list that are not involved in providing or reimbursing for health services. Even with these caveats, the 25% figure is consistent with our earlier surveys reported below.
The second major piece of research attempted to measure the actions of at-risk individuals rather than general public opinion. Zick et a1. studied 105 women age eighteen to fifty-five years from a large kindred who had undergone research genetic testing to determine whether they were carriers of a breast cancer mutation (BRCA I), Of these women, twenty-eight tested positive and seventy-seven tested negative. A control group consisted of 177 women from the general population who had not had genetic testing but who had at least one first- or second-degree relative with breast or ovarian cancer. The study followed the women for one year to ascertain whether they differed in life insurance-purchasing behaviour based on genetic information. In other words, would a woman’s knowledge of her genetically increased risk of breast cancer lead her to purchase more life insurance or adverse selection?
The authors found no differences in the number of life insurance policies purchased or coverage levels between women in the study kindred and those from the general population. Neither family history, testing status, nor participation in prior BRCA 1 research studies had an effect on purchasing life insurance.
The authors recognized, however, that the study had some clear limitations, including at least the following:
(1) the Utah study population was quite homogeneous and consisted largely of active members of the Church of Jesus Christ of Latter Day Saints;
(2) only twenty eight women tested positive; and
(3) the one-year follow-up period may have been too short. Nevertheless, at a minimum, the study failed to find evidence that adverse selection in life insurance would be an immediate and widespread reaction to knowledge of a genetically increased risk of breast cancer in an at-risk family.
Third, another study assessed the effect of genetic testing for breast cancer risk on the life insurance purchasing behaviour of women in a university-based breast cancer clinic from 1995 to 2000 (Armstrong et al. 2003). Surveys were mailed to 1,186 women, 926 who had participated in the clinical risk assessment program and 262 who had tested positive for a BRCAl/2 mutation through a research testing protocol. The questionnaires asked about current life insurance coverage, changes in life insurance made since going through the program, and occurrence of life insurance discrimination since participation in the risk assessment. A total of 709 questionnaires were returned, but only 636 respondents were deemed eligible for inclusion in the final study cohort.
Almost half the women expressed concern about future life insurance discrimination if they underwent genetic testing, and this fear was a leading reason for refusal to undergo testing. Despite the fear, however, there was no evidence of actual discrimination. Thirty-seven women (6%) reported changing their life insurance coverage after genetic testing or counseling, with twenty-seven increasing coverage, six decreasing or canceling coverage, and four not specifying their action. Women who increased their coverage were more likely to have tested positive for a BRCAl/2 mutation.