Janet Heggblom never expected applying for life insurance to be so difficult.
But when the resident of Richmond Hill, Ont., now 62, went looking for a plan in the early eighties, she found she had a problem. She was rejected twice and those that would accept her wanted to charge her inflated premiums. Their reason: her family history of Huntington's disease.
"You feel totally discriminated against. You feel like you're a lesser person to the person standing next to you," she said. "Otherwise, why wouldn't they give you the insurance?
Perceptions of genetic discrimination are widespread across Canada, according to a new study published this week in the British Medical Journal.
It found that nearly 40 per cent of Canadians at risk for Huntington's disease because of their family histories feel they have been discriminated against, most often by insurance providers. Huntington's is a rare, incurable genetic neurodegenerative disorder that affects roughly 1 in 1,000 Canadians.
About 30 per cent of respondents said they had faced discrimination from life, disability and mortgage insurance providers who had rejected their applications, charged them higher premiums or requested that they take a predictive genetic test, said co-author Michael Hayden, Canada research chair in human genetics and molecular medicine at the University of British Columbia.
Discrimination was also prevalent in family and social settings, where those at risk felt they had been treated unfairly, though few reported problems in employment, health care or public sector settings.
Those who work with people who have genetic diseases say that discrimination is common, but has remained largely undocumented.
Jo Anne Watton, director of individual and family services at the Huntington Society of Canada, said the study confirms what she has been hearing from members for years.
"People are very fearful," she said. Many worry they may lose jobs or be rejected by family members or friends if they reveal that they have Huntington's or that it runs in their families.
Concerns over the increased use of genetic testing and how that information will be used have been brewing for years, but most study participants blamed family history - not testing - for the discrimination they experienced. While those who tested positive for the Huntington's mutation did report the highest levels of discrimination, the difference between those who tested positive and those who tested negative were not statistically significant.
But Ms. Watton, who is also a founding member of the Canadian Coalition for Genetic Fairness, said she is particularly concerned that insurance companies may be pushing people to get genetically tested for diseases before they are emotionally ready.
Insurance companies are not supposed to ask applicants to be genetically tested, according to a 2003 industry position statement. And if individuals have been tested, the findings are supposed to be considered among a host of other factors and not used as an excuse to deny coverage.
Frank Zinatelli, vice-president of legal services and associate general counsel at the Canadian Life and Health Insurance Association, expressed concern that this might be happening, but said that insurance companies have every right to include questions about family history and genetic conditions.
"As part of the underwriting purpose, an insurance company tries to look at the whole picture about an individual," he said. "Our job is to discriminate fairly. That's what insurance is."
Still, Ms. Watton worries people may be reluctant to take potentially life-saving genetic tests for fear the results could be used against them by insurers, health-care providers or employers.
"If you are afraid about being rejected by insurance companies, you're not going to get genetically tested," she said.
Toronto's Tim Irwin, 37, who tested positive for Huntington's in the mid-nineties, said that the study's findings are deeply disappointing.
"Life's hard enough without having to deal with extra strain caused by discrimination," he said.