Issues Related to DNA Testing for Huntington's Disease in Symptomatic Patients

ABSTRACT

The DNA test for Huntington's disease simplifies diagnosis, but does not eliminate clinical and ethical issues. Records of 80 consecutive patients who had testing were reviewed; 54 had a positive result. We present seven examples of the variety of problems disclosed by our review. Among the issues that remain unsettled are: (1) Who should do needed counseling and how much? (2) When, if ever, is presymptomatic testing for this incurable disease indicated? (3) Should the patient have access to information about the length of repeats, as the age of onset is affected by the length of repeat? (4) Is it true that insurance companies or relatives have no right to learn the results of DNA testing on a patient?

Keywords

Huntington's disease - DNA testing - genetic - informed consent - predictive testing - counseling