Should new couples be given genetic tests for adult on-set diseases?

Haaretz    A panel of experts is considering adding tests for diseases that develop in adulthood to the standard genetic tests given to young couples when they are starting a family. Currently, these tests only cover diseases that develop in childhood. [...]

The National Bioethics Council, which advises the Health Ministry, set up the panel in response to a proposal to add one specific test, for a mutation of the GNE gene that is common among Jews of Persian origin and causes HIBM, a neuromuscular disease for which there is currently no treatment. HIBM begins with muscle weakness, usually when the patient is in his thirties, and ends in total paralysis.

The National Bioethics Council, which advises the Health Ministry, set up the panel in response to a proposal to add one specific test, for a mutation of the GNE gene that is common among Jews of Persian origin and causes HIBM, a neuromuscular disease for which there is currently no treatment. HIBM begins with muscle weakness, usually when the patient is in his thirties, and ends in total paralysis.

The National Bioethics Council, which advises the Health Ministry, set up the panel in response to a proposal to add one specific test, for a mutation of the GNE gene that is common among Jews of Persian origin and causes HIBM, a neuromuscular disease for which there is currently no treatment. HIBM begins with muscle weakness, usually when the patient is in his thirties, and ends in total paralysis.a

Because the current tests relate only to diseases that develop in childhood, this counseling only addresses the possible implications for the couple’s children, while ignoring the implications for the parents. Yet a genetic mutation can affect the parent even if he hasn’t developed the disease it causes. For instance, a mutation of the FMR-1 gene can cause autism or developmental delays in children, but women who carry this mutation face an increased risk of early menopause and of developing neurological diseases such as Parkinson’s later in life.[...]