South Asian parents less likely to agree to genetic testing for their children: study

A new study on genetic testing from the Hospital for Sick Children in Toronto, Ontario, has found that South Asian parents in Canada are 75 per cent less likely than parents of European descent to agree to genetic testing for their child. A first of its kind in Canada, the study surveyed 320 parents from the Greater Toronto Area whose children were being treated for nephrotic syndrome, a kidney disorder that causes the body to excrete too much protein through the urine.

The parents were asked whether they would be interested in having their child tested for a specific gene that is thought to trigger relapses of nephrotic syndrome and potentially lead to further progression of kidney disease. Overall, 85 per cent of parents were interested in the testing for their child, while the majority (71 per cent) of those who were either unsure or uninterested in having their child tested were found to be of South Asian or East/Southeast Asian background.

“This underlines the importance of how genetic testing is framed and what information is gained in parental decision-making processes,” say the study’s authors. “Healthcare professionals must be prepared to address concerns of South Asian and East/Southeast Asian parents, particularly immigrants to Canada, about genetic testing and perhaps identify the personal barriers influencing healthcare decisions.”

Nephrotic syndrome is the most commonly diagnosed kidney ailment in children and has a higher rate among children of South Asian ancestry in Ontario. The disease is treated with steroids, with most patients responding well to treatment and exhibiting a strong prognosis for long term renal health. But a significant number of cases (about 10 to 20 per cent) are steroid resistant and often progress to serious renal disease requiring dialysis or kidney transplant within 10 years of diagnosis. Genetic testing has been shown to isolate steroid resistance in a large number of cases.

The most common reasons parents were either uncertain or unwilling to have their child tested were a preference to wait until the child was old enough to decide for his or herself, a belief that the results would not help their child in the future and a lack of understanding about the testing.

In the United States, studies show ethnic and cultural differences in responses and attitudes towards genetic testing. African Americans, for example, have been shown to be less likely than Americans of European descent to accept or see the potential benefits of genetic testing for disease risks.

In Canada, visible minorities have been shown to be less likely to use hospital or cancer screening services than non-minorities, with studies showing that South Asian and Chinese immigrants to Canada have poorer health status caused by negative personal attitudes towards using Canadian healthcare services.

A 2013 study of aging South Asian Immigrants in Calgary, Alberta, found that the most significant barrier to use of healthcare services for this ethnic group was having a negative attitude towards healthcare services, caused by beliefs that using the services would make one feel ashamed or uncomfortable and/or that the healthcare professionals could not be of help.

The new research was published in the Canadian Journal of Kidney Health and Disease.

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