Molecular genetic testing and genetic counselling need to be encouraged through government support, said Dr Elise Heon, professor of ophthalmology, University of Toronto, Canada.
She was speaking to Express on the sidelines of a symposium on ‘Inherited Retinal Disease Genetics and Newer Treatment’ here on Saturday. She said the most cost-effective approach was team management involving ophthalmologists, gene therapists, genetic counsellors and social workers.
She said the government has to provide funds required to treat inherited retinal disorders that often go unnoticed.
“People who are visually impaired tend to hide the fact they are blind because they fear losing their jobs and social life. This can be changed with the right kind of treatment framework and support,” she said.
She added awareness levels on such issues is “alarmingly low” in India. She recounted her visit to Pavagada in Tumkur last week where she found a high prevalence of hereditary retinal diseases like retinitis pigmentosa and retinal dystrophy among children.
“We found six children in the age group of 5-12 years suffering from hereditary diseases,” she said.
Meanwhile, Dr Tony Moore from the University College, London, emphasised the need for genetic counsellors to explain how retinal diseases can pass from one generation to the next and cause blindness even in children. “Rare retinal diseases are on the rise and the trend is comparable to that of diabetes. Genetic counselling is very important so that people can protect their vision before it becomes too late,” he said.
Pointing that there is an increasing trend in the Asian community in UK towards conducting genetic molecular testing among prospective suitors in a family, he said it is better to do tests before irreparable damage.
Dr Heon added that molecular genetic testing to determine causes of a person’s inherited vision loss is yet to be made cost-effective.