Clinical Ethics in Hereditary Neuromuscular Diseases such as Duchenne Muscular Dystrophy

Abstract

There are many ethical issues in the health care of hereditary neuromuscular diseases such as Duchenne muscular dystrophy. The problems lie in the protection of personal genetic information in genetic diagnosis and genetic discrimination. The idea that allocating expensive medical care to such patients with severe disabilities is futile should be avoided. QOL as patient's individual subjective perception has not been completely understood in the academic field of clinical ethics. From the view of a third party it might be thought that the neuromuscular disease patients' QOL is extremely low. In such cases, ventilator therapy, PEG placement, and latest antisense nucleotide therapy might be considered wasteful. However, these therapies must be necessary and appropriate from the patients' own view. These dilemma on clinical ethics can be solved by focusing on enhancing the patients' subjective QOL. This can be achieved by means of modern genetics, symptom control techniques and the use of a safety net medical care system with a multidisciplinary team.