Huntington’s disease is an incurable genetic disorder that is inherited in an autosomal dominant manner. A diagnosis of Huntington’s disease can be very distressing for a patient and their family to receive. There is no cure for Huntington’s disease and eventually patients require full-time palliative care.
One major ethical issue that surrounds Huntington’s disease concerns the genetic test that is used to diagnose the disease. This raises questions about how old a patient needs to be before they are considered mature enough to undergo testing, how confidentially the results are handled, and whether test results should be used to aid decisions on employment, insurance and other financial aspects.
In 1910 Charles Davenport made a very controversial proposal that people with certain diseases including Huntington’s disease should be subject to compulsory sterilization and immigration control, as part of the eugenics movement.
Another ethical issue in the debate over Huntington’s disease is the use of embryonic stem cells in the research and development of therapies to cure the illness. The use of animal experiments and transgenic animal models that have been genetically engineered to develop symptoms of the disease is also a subject of ethical debate.
The development of a genetic test that can diagnose Huntington’s disease has led to several social, ethical and legal debates in terms of how such results should be accessed and used. For most testing procedures, strict guidelines for disclosure and confidentiality are in place that enable patients to decide when they are given their results as well as who the results are made available to.
In the United Kingdom, most companies have agreed to abstain from using any genetic information when drawing up insurance policies. However, Huntington’s disease is one exception to this agreement. Another controversial issue is the pre-symptomatic testing of a child or adolescent. As a condition that typically has a later symptom onset, people question whether this testing would be of any benefit to individuals. It has generally been agreed that only individuals who are considered cognitively mature should be tested, but a counterargument is that parents should be allowed to make the decision on their child’s behalf. Ethical concerns related to prenatal testing and preimplantation analysis also exist. For example, a positive prenatal diagnosis of Huntington’s disease may lead to selective termination of pregnancy, which is considered unacceptable by some.
Reviewed by Sally Robertson, BSc