the nature of the science is that there are two sides of the coin, fotopoulos adds. there are people who want to understand their genes and the risk factors for their families, and there are others who would prefer to not know.
“half the people that we offer the predictive testing to would like to know – they want to get their things in order. they take early retirement, they’d rather spend more time with their family,” fotopolous says. “and then the other half will be ‘no, i want to enjoy my life. i don’t want to know.’ and both are completely valid.”
access to genomic testing a challenge for canadians
genomic testing faces a greater challenge when it comes to impacting the lives of canadians – accessibility.
“most provinces in canada are behind in genomic adoption,” dr. kapoor says, adding that there’s limited availability, uneven distribution of resources, and high associated costs that make it inaccessible for many patients across the country.
the problem with these high costs, exporting of data, and wait times is that many patients who are suffering need faster results to make the best decision on treatment options.
“it’s definitely not equal,” fotopoulos adds. “[for als] the waiting list to see a genetic counsellor and to receive genetic testing is maybe two years. however, als, the prognosis after diagnosis is two to five years of life expectancy. so these are people who are not able to receive genetic testing and counseling for their families.”
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