In Quebec Canada a movement is started to incoprorate two extra genetic disorder disease in government genetic carrier testing program.Mucolipidosis and Zellweger syndrome is increase in population in recent past.
Testing Program
The government current program screens for 4 inheritable diseases.Majority affected people from Haute Cote Nord Charlevoix Lac Saint Jean and Saguenay. Peirra Lavoie is very emotional he lost two children due to lactic acidois a genetic disease incorporated in present screening program.
In current program these sickness includes motor neurophaty, type 1 hereditary tyrosinemia, spastic astaxia, hereditary sensory.
The current program requires $100,000 annually including the two additional disease would augment the budget by $10,000. He also undermine the huge emotional and financial rise on families when a child is born with these incurable diseases. People are very grieved that children are continue to be born with these symptoms are not included in existing testing programs.
Two years before a request was made to the Ministry of Health to incorporate Zewellger syndrome and mucolipidosis into the testing program.
Thesre diseases has extreme disabling nature and high carrier rate. These are incurable and lead to chilhood death in majority of cases.But INESSS not preferring to include these diseases.