Help Shape Policy Change for the Prevention of Mitochondrial Diseases in Canada

Forough Noohi, a PhD student in the Department of Human Genetics at McGill University, is doing research in the field of gene editing technologies, more specifically Mitochondrial Replacement Therapy (MRT). The research involves ethical, social, and regulatory aspects.

MRT is a new type of in vitro fertilization that aims to prevent the transmission of mitochondrial diseases (transferred through the maternal line) by replacing mutated mitochondrial DNA in unfertilized oocytes or zygotes with normal mitochondria from a healthy donor. Since as a result of MRT, permanent changes are made to the germline that would be transmitted through generations, this controversially so-called “three-parent IVF” is considered as a means of genetic modification. MRT in Canada is considered a criminal offence according to article 5(1)(f) of the Assisted Human Reproduction Act (2004), which prohibits any practice that modifies the genome of “a human being or in vitro embryo such that the alteration is capable of being transmitted to descendants.”

She would like to assess perceptions of patients who are not affected by mitochondrial diseases in order to identify and address multiple, inter-related questions pertaining to policy and decision-making for preventing mitochondrial diseases in Canada. Your comments will be of great value in moving forward with this research. If you are interested, please contact forough.noohi@mail.mcgill.ca for more details.