Huntington’s disease (HD) is a neurological degenerative disease that has an onset in most people between the ages of 30 and 50. There is no cure for this condition, and it is progressive. Symptoms include deterioration in movement, cognition, and generalized functioning. Death usually results from respiratory illness.
HD is an inherited condition. A child of an affected person has a 50% chance of inheriting the faulty gene that causes the condition. Genetic predictive testing is now available for persons over the age of 18 who have an affected parent or relative, which will tell them in almost all cases whether they will develop the disease at some stage in their life.
Worldwide, of those eligible for the test, only around 15% of people have taken up the option of testing.
Mr. H is a 25-year-old man whose grandfather died 10 years ago from Huntington’s disease. Mr. H’s mother has therefore a 50% chance of developing HD. She decided to have the genetic test and has been shown to have the faulty gene. She will definitely develop HD at some time, and Mr. H is now at 50% chance of developing HD.
Mr. H is an air traffic controller. He loves his job and he feels he could perform his duties most adequately for many years, irrespective of whether he carries the faulty gene for HD or not. He does not wish to have the genetic test. His employer is unaware of his family history.
Q: Do employers in industries involving public safety have the right to demand family health history information? In cases where genetic predictive testing is available for conditions that may impact on public safety, do employers have a right to predictive testing information about an individual whose current health status is excellent?
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