The purpose of this project is to estimate the likely effects of testing for BRCA1 and BRCA2 mutations on the cost and price of life insurance contracts, under conditions where insurance companies do not have access to women's genetic test results.As opportunities increase for members of the public to undergo genetic tests that help predict future disease states, the insurance industry is becoming concerned that its financial solvency will be threatened unless it also has access to the same genetic information available to individuals. This threat comes in the form of "adverse selection." Those women who learn through genetic tests that they are at higher risk of death or disease may purchase more insurance. if insurers do not have access to the test results, they are less able to identify which individuals are at high risk and which are not, and so they cannot adjust premium prices appropriately. in theory, life insurance markets can disappear under such circumstances, leading to a situation in which no one can obtain insurance. Many insurance industry representatives point to the theory of adverse selection as a rationale for new regulations that might require that all genetic information available to individuals also be made available to the industry. This request for a "level playing field" contrasts with opposite efforts by consumer and patient groups to increase the privacy protection of genetic information-largely because of concerns that it will lead to discrimination of the very kind the insurance industry believes is essential for its solvency. Contemporary debates about this issue pit women's legitimate interests in privacy against insurers' legitimate interests in financial solvency. Very little empirical work is available to move these debates beyond rhetoric and anecdote, and yet they are the centerpiece of over a dozen recent legislative bills addressing genetic privacy and discrimination. The theoretical basis for concerns about adverse selection is sound. The overall goal of this project is to determine if those theoretical problems are likely to occur in reality if BR CA 112 test information is available to women who desire it, but remains out of the reach of life insurers. The specific aims of this project are: [A] To develop a computer-based actuarial model reflecting the impact of BRCA1/2 testing on the cost of life insurance contracts. [B] To develop approximations of these outcomes based on plausible estimates for individual behavior. [C] To refine those estimates based on observations of insurance purchasing decisions within a cohort of women tested for BRCA1/2 and the expressed intentions of a more broadly representative sample of US women. The results from this study will speak specifically to the actuarial implications of testing for heritable breast and ovarian cancer, but also more generally to other cancers and other genetic conditions for which predictive tests are developed.
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