Type 1 Diabetes Risk

Abstract

Type 1 diabetes (T1D), usually diagnosed in childhood, is a lifelong chronic disease requiring daily insulin injections for survival. T1D is associated with many serious complications that begin to appear 15-20 years after diagnosis including blindness, kidney disease, leg amputations, and cardiovascular disease. These complications reduce the patient's quality of life and increase mortality. Life expectancy of a patient with T1D is reduced by at least 15 years (Portuese et al., 1995). The role of genetic testing in T1D is both interesting and controversial. It plays a critical role in the scientific effort to understand the etiology and natural history of this disease. However, genetic testing—in the absence of meaningful prevention—raises a number of ethical and psychosocial concerns. Although scientists continue to test potential prevention strategies (e.g., Ludvigsson et al., 2008), to date, large-scale T1D prevention trials have failed (Diabetes Prevention Trial—Type 1 Diabetes Study Group, 2002, 2005). Consequently, genetic testing for T1D has yet to deliver any viable method to prevent the disease. This chapter will address what is currently known about genetic testing for T1D and the ethical controversy surrounding it. The available literature on the psychological impact of that testing on families will be reviewed and its implications for patient care, research, and health policy will be discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved). (chapter)