Knowing that you are at risk of Huntington’s disease may have an impact on whether you decide to have children or not. The decision to have children is a very personal choice between you and your partner. This section looks at some of the options available with regards to having children.

The Genetic Risk to Children

The risk of passing on Huntington’s disease is usually the main concern when people at risk are thinking of having children. A lot depends on whether the person wanting children knows their gene status or not. Some people decide to test before they have children in order to find out whether there is a risk of passing the disease on to their children.

A person with a Huntington’s disease affected parent has a 50% risk of having inherited the Huntington’s disease gene. Each child of that person has a 25% chance of inheriting the condition. But this ‘25%’ only applies while the person is untested.

If a person has been tested and received a negative result, meaning they will not get Huntington’s disease, then that person will not pass on the risk of inheriting the condition to children. However, if a person has tested positive, meaning they will develop Huntington’s disease at some point in life, then each child will have a 50% risk of inheriting the condition.

Making Decisions

Having children is a passionate and emotional issue that often causes debate amongst families affected by Huntington’s disease. People may not agree with the decisions others make, but it is important to remember that everybody has a right to make their own mind up and make their own decisions in life.

Some people take the stance that they will never have children because they do not want to have a child at risk or have that child grow up in a family affected by Huntington’s disease. Other people go ahead and have children at risk, because there is a chance the child will not have the expanded gene, or they feel there will be good treatments or even a cure available by the time the child grows up.

Others want to have children, but want to reduce the risk of them inheriting Huntington’s disease. Technology and science has made this more of a possibility, and there are a number of options available that may provide a child free of the risk of Huntington’s disease.