HD Testing Confidentiality

From the Fall 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Professional-patient confidentiality is governed by individual state laws. For example, in some states, although there is a professional-patient "confidentiality", patient records may be subpoenaed by a court of law and must be provided. The person being tested may wish to have his or her test results classified in a psychiatric record rather than a general medical record, as in some states this can increase the level of confidentiality of test results. The individual at risk for Huntington's disease should be aware of the laws of the particular state in which he or she is tested.

Test results should not be divulged to anyone other than the participant without the written consent of that individual. No names or identifying materials should be computer-coded. It is conceivable that the director of a particular test site may wish to use individual findings for reports or research purposes. In these instances, identifying numbers, not names, should be used to do test score analysis.

Only in the most exceptional circumstances, i.e., prolonged coma, death, etc., may information about the test result, if so requested, be provided to family members.

Test centers requesting a sample from an affected family member in addition to the at risk application should not establish direct contact with the relative without the applicant's permission. All precautions should be taken when approaching such a relative.

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Created: Oct. 9, 1999
Last updated: Dec. 2, 2010