Genetic testing for neurologic diseases. A rose with thorns.
Genetic testing for neurologic conditions, including HD, requires that the primary concerns of informed consent, counseling and support, and confidentiality be recognized and addressed. A safe, reliable test should be available to those who want the information and understand the limitations of the testing procedure. However, testing should be in the context of multifaceted counseling, which combines a variety of components. Safeguards for confidentiality should be assured. Predictive testing for hereditary disease emphasizes the need to focus on capabilities rather than disability. This is an extension of the larger reality that continuing advances in health care can extend the length of an individual's life and stave off death without restoring health. Certainly, new developments in molecular biology may provide new tools, but the basic ethical problems are fundamental issues independent of technology. Just as change is not necessarily progress, the application of scientific advances to health care does not automatically benefit humanity. Sensitivity to human needs is the art of applying medical technology.
Bird
S J
SJ
Department of Brain and Cognitive Sciences, Massachusetts Institute of Technology, Cambridge.
D004992:Ethics, Medical; D005820:Genetic Testing; D006801:Humans; D006816:Huntington Disease / Q000175:diagnosis / Q000235:genetics*; D011296:Prenatal Diagnosis