Notice on the addition of two diseases to the carrier test offer for four recessive hereditary diseases in people from Saguenay–Lac-Saint-Jean, Charlevoix and Haute-Côte-Nord

The Department of Clinical Prevention, Dental Health and Screening of the Ministry of Health and Social Services (MSSS) submitted to the Public Health Ethics Committee (CESP) a project to add two diseases to the offers carrier tests for four recessive hereditary diseases in people from the Saguenay–Lac-Saint-Jean, Charlevoix and Haute-Côte-Nord regions. The two diseases covered by the addition are mucolipidosis type 2 and Zellweger syndrome.

In the light of its review, the CESP concludes that the addition of mucolipidosis and Zellweger’s syndrome is justifiable from an ethical point of view, but wishes to draw the attention of those responsible for the project to the issues of transparency and solidarity with the populations concerned, criticism of their full involvement in a necessary debate about the offer of screening and its consequences.

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