Huntington Disease

The genetic test for Huntington disease raises profound ethical questions. It offers people who are at risk the opportunity to know whether they inherited the gene. Yet many people at risk choose not to be tested. Currently, no treatment existed to cure Huntington disease or even to delay the onset of the disease. Given this reality, many people would rather live with uncertainty than take the chance of learning that they will develop an incurable, fatal illness. Additionally, an ethical dilemma arises in cases where a grandson or granddaughter desires testing but their parent does not. If a grandparent is affected and the grandchild is affected, then by default the parent that is biological related to both is affected. Other concerns related to genetic testing of Huntington disease involves guilt associated with not having the disease gene when a sibling is a carrier. Guilt is also commonly experienced by the parent that is responsible for passing the disease gene to their offspring. These emotional experiences can have a profound effect on the family dynamics.

Prenatal testing, now offered for several genetic diseases, is also available to parents whose fetus is at risk for Huntington disease. Genetic testing also raises the right to privacy. Do employers, health insurers, or the government have the right to know whether a person at risk has been tested, or the right to know the results of the test? Most researchers and ethicists, including Wexler, promote the need for privacy. These ethical questions are not unique to Huntington disease.

As the genetic components of other illnesses are discovered, especially for late-onset illnesses like Alzheimer disease and certain cancers, these questions will become more relevant and pressing. In many ways, the implementation of the genetic test for Huntington disease may serve as a model for how genetic testing is used in medicine and impacts society.