Children and adults
Children and adults can also be tested on hereditary conditions.
We distinguish tests with a predictive character (predictive genetic tests) and tests confirming a certain image (diagnostic tests).
Fred’s dad has Huntington’s disease. This is an incurable, fatal neurological condition. Every child, whether male or female, of a patient suffering from Huntington’s has a 50% chance of inheriting the disease. After long consideration, Fred has decided to get tested. Yet, he is very worried about getting unfavourable results. He feels like his entire future will be blocked at once.
With predictive or pre-symptomatic genetic research the applicant wishes to be tested for a genetic disease that runs in his/her family while he/she has not yet developed the disease. The result thus reveals information on the chance of someone getting ill in the future.
As a child, Suzan was very limber. Really flexible. When she got older, her joints got very often dislocated, with all that this entails. Most of the times she is in pain and she always feels tired. Stand up, sit down, shake hands, etc…. it all requires quite an effort. Because medical tests revealed nothing she was not taken for granted and no one understood her. Finally, after a very long search, a hereditary connective tissue condition (Ehler-Danlos Syndrom) was diagnosed.
In case of diagnostic genetic research the patient is ill and the genetic test has to confirm the diagnosis or to tell whether or not the disease is hereditary.
Children are only tested if treatment is possible or if choices need to be take in view of their future.
Patrick is twelve. Since his father turned 18, he suffers from a hereditary condition which has mainly motor-impairing consequences. Patrick has mediocre school results and would like to go to a technical high school. His parents wonder if he will have the physical capability therefore and apply for a genetic test.
There is a widely-shared consensus on freedom of choice of the individual to be tested or not, and on the fact that such a decision is best taken at adult age. There are exceptions to this rule: if the test regards a hereditary condition which involves direct medical consequences for the child, or if the child or adolescent has to make choices that might have consequences for his/her future. If in puberty a test shows that a hereditary eye condition will seriously decrease one’s eye sight, appropriate educational choices can be made. These choices determine one’s future professional career.
Click here to download a brochure on predictive genetic research if you want more information.
Last updated: 17 July 2018 - 11:17
Copyright 2018 Center for Medical Genetics, Gent.