GET THE FACTS ABOUT GENETIC TESTING
Dr. Rosalee Yeaworth's article, "Long-term Care and Insurance" in the November issue (Vol. 28, No. 11, pp. 45-51) was both timely and informative. Against the backdrop of Alzheimer's disease, she rightly pointed out this product's complexity. One of the respondents to Dr. Yeaworth's questionnaire described being rejected for long-term care insurance because her physician documented a discussion in which she raised the subject of genetic testing for Alzheimer's disease in light of a family history of the disease. This case raises a host of issues not addressed in this article but worthy of further attention in a special issue devoted to genetic testing.
At present, more than 800 genetic tests are currently available or in development. Most of these tests are for rare diseases, but others to identify inherited risk for common diseases such as Alzheimer's disease also have been developed. The value of these tests should be carefully evaluated (Burke et al., 2002). For example, the rare, early-onset form of Alzheimer's disease can usually be identified through testing, but a genetic test for the more common, late-onset form of the disease is not considered a valid tool for predicting risk and offers little or no clinical value (Mayeux et al., 1998).
Practitioners need to know the facts about the benefits and limits of these genetic tests. Patients must be informed about the risks associated with simply inquiring about testing, let alone being tested. Until better privacy laws are in place with respect to the growing number of genetic tests, patients and their families are probably well advised to ensure that a paper trail is not created.
Daniel Kuhn, MSW
Director of Education
Mather Institute on Aging
Burke, W., Atkins, D., Gwinn, M., Guttmacher, A., Haddow, J., Lau, J., Palomaki, G., Press, N., Richards, CS., Wideroff, L., & Wiesner, G. (2002). Genetic test evaluation: Information needs of clinicians, policymakers, and the public. American Journal of Epidemiology, 156(4), 311-318.
Mayuex, R., Saunders, A.M., Shea, S., Mirra, S., Evans, D., Roses, A.D., Hyman, B.T., Crain, B., Tang, M-X., Phelps, CH. for the Alzheimer Disease Consortium on Apolipoprotein E and Alzheimer's Disease. (1998). Utility of die Apolipoprotein E genotype in the diagnosis of Alzheimer's disease. New EngUnd Journal of Mediane, J3Í(8), 506-511.
I appreciate Mr. Kuhn' s interest in my article and his evaluation of it as timely and informative. I believe he is correct in stating practitioners need to know the facts about genetic testing and patients need to know the risks about inquiring about testing and about having genetic test results in their records. As nurses, we probably need to rethink the necessity of the amount and kinds of information we dutifully collect and enter into files and records. Today, it's not just the paper trail, but the electronic. Having recently been the victim of identity theft, I am very nervous about what is in computer files and storage, and who can figure out ways to access it.
Rosalee C. Yeaworth, RN, PhD
Professor Emeritus and Dean Emeritus
University of Nebraska Medical Center