The science and practice of testing for Huntington's disease
Are genetic test results confidential?
Generally, all information obtained through genetic testing is strictly confidential. According to guidelines for genetic testing, test results should not be disclosed to anyone other than the individual who was tested, unless that individual gives his/ her written consent. However, individual state laws govern professional-patient confidentiality, and the specifics of these laws vary from state to state. Thus, individuals considering genetic testing should become familiar with the laws of the state in which they will be tested and the specific policies of their testing center. In some cases, an individual can increase the confidentiality of his/her test results by requesting that they be classified in a psychiatric record instead of in a general medical record.
Technically, it is possible to perform a direct genetic test for HD on an anonymous blood sample. However, genetic testing guidelines advise laboratories NOT to accept anonymous blood samples for HD testing. According to the Huntington’s Disease Society of America’s Guidelines for Genetic Testing for Huntington’s Disease, “While the confidentiality of genetic test results is of great concern, anonymous testing would not increase the protection for a person at risk for Huntington’s disease and could pose a danger.” Thus, anonymous genetic testing for HD is generally not available at official genetic testing centers.
Last Modified: 9-13-02
An educational product of HOPES, not to be used in place of medical care. For more information about HOPES, click on the Logo.
To contact HOPES with comments or questions, click here.
