Canadians are fiercely protective of their genetic privacy, especially when it comes to information that could affect life insurance rates, suggests a federal study obtained by The Canadian Press.
Even though most people think genetic research is a good thing, they don't want the data used for commercial purposes, suggests the study obtained under the Access to Information Act.
The study by Pollara Research and Earnscliffe Research found startling consensus on the privacy issue.
"Though most people haven't fully thought through a variety of genetic privacy questions, insurance company use of genetic information is one of the few issues that is raised spontaneously in discussion and the issue on which there is the greatest consensus," it says.
Fully 91 per cent of those polled last March said insurance companies should not have the right of access to existing genetic information. That was an increase from 86 per cent when the question was first asked four years ago.
Employers fared no better, with 90 per cent of people interviewed saying bosses should not have access to genetic information of workers or job applicants.
Most people understand that genetic tests can identify predispositions to diseases such as breast cancer, Huntingdon's and Alzheimer's, the study found.
Some overestimate the predictive power of current technology, it noted. Only a few tests can predict with certainty that someone will develop a disorder, although literally hundreds can flag an elevated risk.
Insurance companies already require information obtained through genetic testing to be disclosed if it is relevant to an application, said Wendy Hope of the Canadian Life and Health Insurance Association.
If such information is withheld the policy could be invalidated, a principle that has long been followed with medical information.
"If a person has had genetic testing and that information is relevant, and rests with a medical doctor, it is considered part of the type of information that should be disclosed," Ms. Hope said in an interview.
However, Canadian insurance companies do not request genetic testing before issuing policies. Nor is a policy affected by genetic information obtained after approval, she said.
"The thing about genetic information is that that is not the be-all and end-all of an underwriting process, it is only part of the big picture. The insurance industry still views genetic information as largely unproven."
Most people know medical information must be disclosed and have difficulty explaining why genetic information should be treated differently, says the federal study.
But that does not affect the attachment to genetic privacy. "Virtually everyone insists that insurance companies should not have access to genetic data."
In follow-up focus groups, participants were presented with reasons for allowing insurance industry access to genetic information.
For example, applicants with genetic vulnerabilities could load up on insurance, pushing up premiums for others, and companies could go broke. But the privacy concerns remained.
"No argument was seen to be particularly powerful or significantly altered the outcome of the discussions," says the analysis.
"The underlying opinions were so deeply entrenched that they were generally impervious to change."
The study was based on a phone survey of 1,200 people in February 2003 and followed up by two focus groups designed to examine underlying opinions.
There is debate in many countries about the legitimate uses of genetic information, and it is likely to intensify as genetic technology becomes more powerful.