Huntington's disease screening

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Huntington's disease Microchapters

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Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1] Associate Editor(s)-in-Chief: Syed Ahsan Hussain, M.D.[2]

Overview

Screening

Ethical aspects

Whether or not to have the test for HD Genetic counseling may provide perspective for those at risk of the disease. Some choose not to undergo HD testing due to numerous concerns (for example, insurability). Testing of a descendant of a person 'at-risk', has serious ethical implications, as a positive result in a child's test automatically diagnoses the parent.

Parents and grandparents have to decide when and how to tell their children and grandchildren. The issue of disclosure also comes up when siblings are diagnosed with the disease, and especially in the case of identical twins. It is not unusual for entire segments of a family to become alienated as a result of such information or the withholding of it.

For those at risk, or known to have the disease, consideration is necessary prior to having children due to the genetically dominant nature of the disease. In vitro and embryonic genetic screening now make it possible (with 99% certainty) to have an HD-free child; however, the cost of this process can easily reach tens of thousands of dollars. Another consideration regarding genetic testing is the fact that this kind of screening is a form of eugenics. Indeed, historically, Huntington's disease patients were one of the targets groups for the eugenic improvement of the human gene pool. The American scientist Charles Davenport propsed in 1910 that compulsory sterilization and immigration control be aimed at those afflicted with HD (amongst other diseases) [3]

Financial institutions are also faced with the question of whether to use genetic testing results when assessing an individual, e.g. for life insurance. Some countries' organisations have already agreed not to use this information.

References

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