Long-term follow-up of people who have undergone predictive genetic testing for Huntington’s disease

Predictive tests for genetic diseases are being increasingly developed. Huntington’s disease was the first inheritable disease where predictive testing could be offered to people who were at risk of having inherited the disease (50% risk if one parent has the disease). Huntington’s disease usually develops at the age of 30-50 years and the predictive test provides an opportunity for people at risk to find out if they have inherited the disease and therefore will develop the disease or not.

The aim of the present study is to use a qualitative approach to investigate the perceived psychological impact that predictive testing has led to and whether the test has affected the individual’s psychosocial function, close relationships, work, lifestyle and values. The data collection has taken place through semi-structured interviews with 21 individuals who are not carriers and who took a predictive test at least 5 years ago. Qualitative content analysis is being performed on the material collected. The results will provide information about ​​how the predictive test affects the individual and his/her family. This data will be helpful for people considering being tested and for the professional teams guiding these individuals