People fearing disease predisposition tests as information handed to insurers
MP demands action to keep test results private
People are not taking genetic tests to check for predisposition to certain diseases because their information is being given to insurance companies and impacting their possibility of getting various forms of insurance cover, a Labour MP said on Tuesday.
"Should I take a test, the information should remain mine, and mine alone," Amanda Spiteri Grech said when speaking in parliament.
It was wrong, she said, that information from tests taken at Mater Dei Hospital was provided to insurance companies. Tests in private clinics remain private.
Something needed to be done, she said. Have predisposition to a genetic disease did not mean that one had that disease. Knowing about it, however, meant that one could take precautions.
Countries such as the USA ban employers and insurers from using information such as this. Canada has the Genetic Non-Discrimination Act and the UK has the Legal Protection Code on Genetic Testing.
Similar measures are needed in Malta, the MP said. People should not be discouraged from taking genetic disease predisposition tests for fear of having problems with their insurers.
Talks should be held with all concerned for a way forward to be found.
Similarly, she said, people who workin an element of risk, such as rescuers, are facing higher premiums when they seek a loan. This was an injustice, she said, because these people are serving the country.
She said she had spoken to Home Affairs Minister Byron Camilleri and been assured that the government is working on a compensation scheme.
Such people, she said, should not be penalised for serving the country.