An incidental finding happens when during a health check you find something by chance that is not within the scope of the test. Incidental findings may occur, for example, during autopsies, diagnostic testing, medical research or genetic and genome testing.
It can be beneficial for the individual to know about the incidental finding, because it may uncover a potentially serious condition early on and thereby improve the outcome of prevention and treatment. However, incidental findings may also lead to unnecessary worrying and sometimes ethical issues also have to be considered.
The likelihood of incidental findings is greater in genome testing than in gene testing that only examines one or a few genes. A genome test reads the entire DNA and produces information about hereditary traits. The results are therefore not only relevant to anyone participating in a test, but also to their relatives. A genome test may therefore have consequences for people other than the individual undergoing testing.
There is often limited knowledge about whether a genetic mutation causes disease. When a person and perhaps several of their relatives have symptoms, there may be reason to believe that a genetic mutation detected in these people may cause disease. In the case of incidental findings the uncertainty is often greater, because it is not always possible to find examples of disease in the family, and it is therefore doubtful whether knowledge about the incidental finding is beneficial at all.
When incidental findings are made during a genome test in the Faroe Islands, they will be assessed on a case-by-case basis to determine which impact the genetic defect has on the individual and that person’s relatives. In the case of a genetic defect that causes a disease, which with certainty can be prevented or treated, doctors have a duty to notify the person in question of the incidental finding and to provide detailed information as well as genetic counselling.