Genetic counseling is a 2-way street between counselor and the counseled. In this article, both share experiences gained through more than 25 years of searching for the gene, finding the presenilin-1 Alzheimer's disease gene, and waiting for a cure. “Research Families” made research models a reality. Few family members requested presymptomatic testing.
Sherrington R., Rogaev EI, Liang Y., et al. Cloning of a gene bearing missense mutations in early-onset familial Alzheimer's disease. Nature . 1995;375:754-760.
2.
Knopman DSAlzheimer disease and other major dementing illnesses. WebMD Inc. ACP Medicine. Available at: http://www.acpmedicine.com/sample/ch1111s.htm . Accessed August 30, 2006.
3.
Nee LE, Polinsky RJ, Eldridge R., Weingartner H., Smallberg S., Ebert M.A family with histologically confirmed Alzheimer's disease. Arch Neurol.1983;40:203-208.
4.
Van Biema D.Tracking down a killing curse. Washington Post. September 25, 1988;Magazine :30-35.
5.
Alzheimer's Association, Chicago, IL. Available at: www.alz .org. Accessed August 30, 2006.
6.
Nee LEFamilial Alzheimer disease: heralding Harvey, New Brunswick—a harbour of hope. Mature Medicine Canada. September/October 1998:1, 43-45.
7.
Lippa CF, Swearer JM, Kane KJ, et al. Familial Alzheimer's disease: site of mutation influences clinical phenotype. Ann Neurol.2000;48:376-379.
8.
Harper PS, Lim C., Craufurd D.Ten years of presymptomatic testing for Huntington's disease: the experience of the UK Huntington's Disease Prediction Consortium. J Med Genet.2000 ;37:567-571.
9.
Adato A.Living legacy: knowing your medical family tree can save your life. LIFE. April 1995:60-69.
