With medical advances, Canadians can now learn whether they carry the genetic risk for devastating diseases. But that knowledge could come at a price, suggests a study that looked at the growth of "genetic discrimination."
The study from researchers at the University of British Columbia looked at Canadians at risk of developing Huntington's disease, a degenerative brain disorder for which there is no cure or treatment to slow it.
The children of Huntington's patients have a 50 per cent chance of developing the disease themselves, and doctors can further pinpoint that risk by testing for the Huntington's genetic mutation.
The UBC study surveyed 167 people across Canada who had been tested for the Huntington mutation (83 had the mutation and 84 did not), and 66 people who were at risk for the disease but had chosen not to have the genetic test.
They found the respondents reported discrimination most often in insurance settings. A full 29.2 per cent said they had experienced discrimination because of their genetic risk from life insurance, long-term disability, or mortgage insurance companies or agents. The discrimination came in the form of insurance rejection, premium increases, or requests to take a predictive test.
About 15.5 per cent said they had experienced discrimination among family, particularly when making choices about having children, and 12.4 per cent among social settings, particularly by friends or when establishing a relationship.
"Discrimination in the family must be viewed through a wider lens that captures the profound impact the presence of Huntington's disease and predictive testing can have on the family system," the authors write. "Often when Huntington's disease is present in a family, it becomes part of a family's identity and pattern of behaviour."
There were also a few reports of discrimination in employment (6.9 per cent), health care (8.6 per cent), or public sector settings, such as from the courts or adoption agencies (3.9 per cent).
In total, 40 per cent of the respondents reported having experienced unfair treatment because of their risk of developing Huntington's disease, even though none had symptoms. A family history of the disease, rather than the genetic test result, was the predominant reason they gave for discrimination.
The results are published in the British Medical Journal.
The findings could be significant to the many Canadians who undergo genetic testing to assess their risk for illnesses such as Huntington's or breast cancer. The test results help them make important decisions and to plan for the future, or to obtain preventative treatment.
But Dr. Yvonne Bombard, who led the study while she was a UBC doctoral candidate at the Centre for Molecular Medicine and Therapeutics, says patients need to be warned about the possibility for "genetic discrimination."
"The study provides useful information that genetic professionals can tell people when they are counseling them on obtaining genetic testing," said Bombard, who is currently doing a post-doctorate fellowship in public health genomics and policy at the University of Toronto.
"I would like to see society benefit from the effective translation of genomic discoveries while minimizing the risks such as the inappropriate use of these technologies or information."
Dr. Paul Billings, Director and Chief Scientific Officer for the Genomic Medicine Institute at California's El Camino Hospital, says that over the past two decades, "the explosion of human genomic information" has led to more opportunities for genetic discrimination.
"Dr. Bombard's study illustrates that we need continued research and improved public policy in order to create a safe society for knowing hereditary risks and acting on them appropriately."
Both Dr. Bombard and the principal author of the study, Dr. Michael Hayden, are members of the Canadian Coalition for Genetic Fairness, which promotes awareness and policy protections for genetic discrimination issues in Canada.
